View Full Version : I go something like this.....

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11-07-2008, 11:55 PM
your welcome :D , I was always told I was good at nagging :lol: . specially with help from others here, lol.

11-08-2008, 05:02 AM
:lol: One good nag deserves another ...

Glad you are going in to show off your pegs. The road trip may certainly have aggrivated things. As you know sitting standing or doing anything for too long doesn't work well for us.

Although I haven't swollen up badly in quiet awhile ...it's always lurking. I feel like nervous puffer fish just looking for a reason.

11-08-2008, 11:35 AM
After a two hour wait in a coughing, nose sucking up what nots room I was seen...

When the doctor saw my tree trunks, he literally said,.."oh, my, they are big" I thought..Dorthy, Auntie Em. They almost look like pig's legs and hooves with my 4 inch Mary Jane platforms attached to a white leg. I chuckled when I lifted up my pant leg...good thing I wore the flare pant leg. Pushed my thumb into my shin, pulled out a plum......my thumb melted into it like butter....

He listened and palpitated my trunk....Prescribed Lasix, potassium....and for Monday blood work, for my kidneys. Lab was closed.

Now, I wait to be tapped...drained....

I was also given a referral for a dermatologist....

This was my Saturday morning...how was your's...enjoy the afternoon...I'm off to bake cookies for our neighbor who cared for our home and pool while in the UP. We will even share the Juice...one quart...

Thank you for the love, nagging and concern....


11-08-2008, 04:04 PM

Glad you went and had your pegs oggled.

I managed to get another perscription for the plaquenil....woohoo.

My little ovaries are kicking at me today. Hubby is making supper so I dont have too. :D

Hope your legs shrink back to normal soon. I am relieved you are on the way to being sorted out.

11-10-2008, 06:38 AM
Hi Oh, so glad you went. Makes my mind rest easier, hope the meds help. Went walking several times with kids this weekend, lazy hubby wouldn't get up and join as usual :( . Oh well, had fun anyways. Went to the store, they had a clearance outside of removal items. Most was only 50 cents. Rest of the stuff 75% off. Got all 3 kids mp3 players for $20 each. I couldn't believe my luck, the last 3. I usually don't get that lucky. Hope today goes easy for you. May your legs get better.

Hi SITC, glad you got your refill. Feeling any better? I sure hope so, and glad your hubby helped out. Hopefully no more kicking, enough already I'm sure.

11-10-2008, 09:56 AM
Hey Cheryl...

You did get some great buys...with Veterans Day and Thanksgiving around the corner...oh, and the economy more great buys are to come...

I've deflated more, or maybe a a fat loss..of the 13 pounds I am down 8.4. But I have noticed today, my face is swelling up, puffy eyed. Going in this aft for my lab...

One would think I would come back from my holiday, vacation rejuvenated, rearing to go..ugh, seems the opposite. I think the steroids just kept everything in the house, hidden till I stopped dosing. Actually I feel worse...when my body feels worse, toss in the rash my spirit goes on the decline.

Today, I feel like I am a ball of gray clay waiting to be molded...a blob and blah. A blahhy blob...

So, how have you been, how goes life, how's the daycare...it seems a spell since I've really chatted up with anyone. A bleep here, a blurb there between my complaining and my rash.

Happy Monday....I will find a way to make it mine too..

11-10-2008, 12:21 PM
Hi Oh, hope your Monday turns out to be a good one. Here's aggrivating, no shows of any of the 6 kids. A few phone calls about no show on 3, but well into the morning after I have figured it out anyways. I know I offer half days and random days, but there suppose to call and let me know so I don't get up early for nothing. Sat there for an hour this morning waiting, and no one showed :x . They have been told to have the courtesy to call, but of course no one does. Kids and hubby are home tomorrow, no day-care kids I believe so far. Love hubby, but annoying when he's home on week days. Messes up how I run things. He just sits there watching tv as usual, no offer of help since its his day off. I know his works hard, they call him back alot, but I need help too. I don't get evenings and weekends and holidays off to rest like him, he could help a little. Just whines he's tired and they might call him in again, so he needs to rest. BLah, blah, blah :mad: , it drives me crazy. I'll do fine as always do, probably take the kids on a nature walk in woods. Thats the fun of living back on dirt roads, woods all around.

How long will it take to get labs back? Let us know what they say. I do hope its not your kidneys, with all the swelling. Maybe you just need to stay on steroids. I have a doc app. on Friday for bp check of new meds. I haven't took them, but bp has been norm-high norm range. I decided to just try to take care of it myself, but haven't told doc or np. I didn't like the side effects of the others and didn't want to chance it again. I have a post on "lowering bp naturally" if you have any ideas. Had a bad pain experience with pain at an air show why you were away, its "can sound waves from jets cause pain", or something like that. Rob was really helpful with info, kept chatting with me and that helped side track me from the pain. I am going to tell the np Friday that I want the blood work doc normally does once a year done. Its been over a year. I will be honest and tell her that it always comes back negative, but that's always a big relief to hear. To just humor me and releive my mind please. I will also mention the pain with the air show, just to see what she says.

Well that sums it up for now, back to cleaning. Rest those legs, elevate them if needed.

11-11-2008, 06:32 AM
Hi you CV...

I truly wish your husband would contribute in his own home too. Maybe on Thanksgiving when there is no turkey gobbling, say..I was too tired, gobble, gobble, Happy Thanksgiving and toss him a turkey roll lunch meat sandwich on wheat with a side of Stove Top stuffing.

If the daycare children return, their Mom using your service again I would suggest those who are not being courtesy ask for a deposit for 3 days or if unable, say you will bill them and follow through collections. Sometimes we inadvertently set the tone when we don't follow through with the rules.

I fell out for a moment, resting after my shower and slept part of the day away, so I decided I will do my labs Wednesday when I see my dermatologist. Yay, they called..

My husband pick up Evening Primose Oil and T/Gel for me last night...always great with running errands for me, for the house. Hoping one of these products tame the itch. From my reads something is irritating the eczema....

I take cool showers, used various prescription, non-prescription creams, washed my clothes in Allergen free soap and rinsed twice...change my body and hair products. Soft cotton only against my skin. Must be something I eat or my perspiration. Hopefully I will find relief Wednesday.

The itch is maddening..it is like have a gazillion mosquitoes bites...

Everyone in my family takes BP medicine but me. I just heard my little sister doses too now, ugh. I've suggest to them to help lower blood pressure are the basics....avoiding refined food, fried foods, chips, pastry type foods, canned foods, dry soup mixes...prepared meats like sausage, bacon and etc. Basically in a colorful wrapper, prefabricated processed foods. Caffeine....salt. Dose with fish oils, lose weight if over..which is one of the biggest risk factor too..and to do what you are doing, walking. Manage stress....

High blood pressure steals life...sometimes life style changes are not enough or difficult to maintain for some and dosing with a prescribed medicine is a must. Maybe this last medicine won't have such bad side effects, CV.

Yesterday I felt weighed down emotionally, this morning I feel a bit lighter, a spring in my step. I might even venture out of the house and get some winter Petunias to fill my porch hanging pots on this crisp cold fall, sunny day in the south.

Happy Tuesday, CV...off to shower in T'Gel for its coal tar properties...

Be well..hugs,

11-11-2008, 01:44 PM
Hi Oh, itching too still I see. Me too, but no rash. It is very maddening, been trying to stay busy to ignore best I can. Decided to ignore hubby too, less stress that way :lol: . I cut down on caffine, thats helping. I do drink too much coffee, love the flavor so bought decaf. Its going down a little every few days or so. I just made blueberry muffin bread for me and ooy-gooy brownie cake for kids and hubby(my personal recipe :D ). Trying to watch waste line :shock: . I try not to eat processed foods either, big help there. Glad walkings the best, that's my favorite past-time.

Made a few calls, told parents that I'll charge for the day if no calls ahead of time. Hopefully that should help. One quit, but she quit her job is why. I told her she should have called sooner, haven't seen her in a week. Didn't like the child much, sorry it sounds cruel. He was a foul mouth attitude child who is a compulsive liar. Had him for a year, its a relief. His mum worked construction, so had him from 5am-6:30pm. I get more sleep now, others don't show until 6:30am.

Doing my first Thanksgiving at my home, hope it goes well. What are you doing? Everyone else?

11-12-2008, 06:05 PM
Hi CV...

Relief maybe on its way. The Dermatologist thinks I am having an allergic reaction to something and frowned on the previous diagnose, from my PCP... from the lab as spongiotic eczema...

He thinks the allergic reaction maybe from Plaquenil or Protonix..egads what's a girl to do then?

Prescribed Clobex and OTC Cerave. Thank goodness for health, drug insurance. Without insurance the drug was almost $600.00. I paid a bit over $100.00. Insane.

Gosh, I hope this regime works.

I just did the lab work for my inflated legs today, so the results I suspect will be in a few days. I blew up again this morning...popped a Lasix.

Sounds like you are doing the right things to keep you BP within normal range. I am usually like 105/60 give or take few digits...one good thing I have going for me...

Whats on your menu on the day for giving thanks? Ours...we will be here. Oh, probably a 9 pound bird, stuffing..mashed potatoes for my husband and I, rutabagas. Crisp greens. Sparkling apple juice. He enjoys my apple pie, so that will be dessert, washed down with a glass of the Moo....movies, naps. Maybe I might purchase Rummy Cube for entertainment instead of waiting till Christmas...

Hope you had a good day...and have wonderful dreams tonight to enjoy...sleep tight.


11-13-2008, 07:22 AM
Hi Oh, boy I wish my bp was that low. I'd be a happy camper. I do have the bp med on the shelf for back up if it rises. Just want to try lowering it myself since was never given the oppertunity to try.

This will be my first Thanksgiving in my own home. I'll be making an 18lb turkey, gravy, stuffing, mashed potatoes, baked yams, corn cobs, navy beans(southern girl, I just have too :lol: ), brown-n-serve rolls, cheese cake(hubby's job), cookies and pumpkin pie. Bad thing is that so far only 2 may show up, but no biggie. I have neighbors on disability and some no family to visit, so probably take them some food. I bring them cookies every year and chat a while. Ones only in her 40's and the other only in her 50's. So young to have to be stuck at home and no one to show. One lady down the road has 5 kids and always having a hard time feeding them, so probably send some there too. I give her all my aluminum cans to help her with food bill. Funny, I can't stand her, but I grew up in house with 10 kids. I remember how hard it was to keep food in the house and always hungry. I like the kids too.

Hows the itch today? Mines moved to the back where its hard to scratch, maybe a good thing :lol: . I wish I knew the cause since there's nothing to see. Oh well, thats life. Trying to relax today, so not to raise bp thinking of my app tomorrow. Bringing the journal I have with the readings the last few weeks. To show its been fine at home.

Have a happy Thursday, chat back later.

11-13-2008, 02:48 PM
Hi CV...

Sounds like a lovely Thanksgiving spread and it will be yuuuuummy with such a great chef, you behind the apron.

Our dinner will be for four only...My husband, me, the cat and dog...Last year my sister, her two boys and my Mum-in-law were here. It was nice...

Last year I had the roaming itch without the rash...maybe nerves or perhaps a little more lube for you?

No big excitement here...gray skies..me loafing. The cat is sprawled out on the hardwood...the dog is prancing about, she lost herself since her episode. Unsure if she is coming or going. The husabnd is setting up his new laptop for his next project. He is flying out Sunday and returning on Friday...

It has been a spell since he has traveled, end of August. 24/7 together now back to 24/7 alone schedule....ugh.

Thursday....uneventful..hope yours had more life...

Type at ya laterz....

11-14-2008, 05:32 AM
Morning Oh, off to see np for a bp check. Wish me luck, baby-sitter bailed and have to take 2yr old with me :shock: . That's not good for bp, but what can you do. Hubby suggested saying I was on bp meds, so maybe she'll change it again if its high. The one she gave me just cost too much. I hope your day goes well. It was gray skies yesterday here too, I actually like that. Except for the aches it brings, the temps nice. Hoping to con np into the blood work that doc does, with no complaints. She reminds me of my hubby, knows everything :lol: . So going to challenge her the way I do hubby when I want something done my way. Hopefully it works, if not screw it. I'm ready to tell her to listen or I'll just quit comming. The itch is driving me crazy and severe jaw pain again, so see what she says to that too.

Hope your days goes well, check back later.

11-14-2008, 10:16 AM
Back from docs. My bp was 140/78 and pulse 62. Not bad for no bp meds. Took low dose of hubby's nerve pill(the one that starts with Z :? ). Been trying to convice the np that stress is why my bp rises, but in time I'll convince her. She gave me a rx of predisone 20mg 2x a day for 5 days, then a couple days cut in half. Its for the itching and the TMJ. Finally dx the TMJ today, but I figured that one out here from everyones help. I finally asked for the blood work, but was honest of unsure what they were. Told her it just had to with bloods and antibodies, had no idea of what. She looked skeptical, so told her it was just to ease my mind please. It makes me feel good to here the neg results. I really just want to see if anything shows up, but treated her like hubby. Smile, be sweet and compliment :D , then lay in with what I want. I'll do that if needed again. How are you dear? Legs and itchies better?

11-17-2008, 09:04 AM
HI CV...

My rash is becoming submissive to the Clobex, thank God, thank you Lord. The rash bumps are flat and the bumps I scratch off are healing. I was a scabby mess. Even with nails clipped to the quick I manage somehow to tear up my flesh. And when I itch it gave such a..it hurts so good feeling. Times I itched it insanely, while uttering to my husband..help me..

With the rash, Gerdie roaring and what feels like a bad PMS..which by the way, I am supposedly post menopause, the edema was/is too much, too many things for my body, my mind to contend with. Too much going on... Literally was driving me to the place of madness, sadness. Now, I am out of the hole mentally...such misery and anguish I was feeling.

The skin is an organ and my mind started to wander into the what ifs. Once I stopped the Clobex, I hope the rash is completely resolved. Gone, gone.

The rash is under control...my breast are still swollen and sore. Ovulation pain? It hurts there too. And Gerdie seems to be healing, calming from the round of prednisone and the UP eats. Gosh, that felt like it bore a hole in my stomach and the pain radiates under my whole chest cavity walls and into my upper back...And the hands and fingers still ache. So weak feeling, that I broken two plates while emptying the dishwasher..too heavy. Ankle too..inflamed.

My husband is traveling for his work again..will return on Friday...he has been home for a few months. Feast of famine.

Do you monitor your BP everyday? Taking Xanax your BP still seems high, or does it go higher? Having headaches from it? When I take Xanax, I feel like I flat line...beeeeeeeeeep.

Still itching? The TMJ subsiding. Steroids at that high dose scared me, since dosing with the 60 mg for my rash. For me, that was way too much...seemed it caused me more problems while sedating the rash for a month.

Did they do the tests you requested? I hope the results are still negative..when will they be in.

My legs have deflated. Took three doses of Lasix to drain the fluid. My tests came back, unknown cause. Not kidney related my PCP nurse said from the results...soo humm. Maybe the edema from the steroids lingered. Just thankful it is gone...that caused my mind to wander in the what ifs too. Heart, kidneys.

Having Lupus makes me worry about things that probably would have never occurred in my thoughts before.

Its Monday..happy one.

I think I am going to spend the day lounging, with intent and desire instead of having to.


11-17-2008, 11:00 AM
Hi Oh, so glad your legs are ok. Relieved it was not the kidneys. So much for one person to deal with, all you had. I sure hope you stay feeling better. By the way you speak and the things you do, you are a strong woman. I try to think the way you do at times, you seem to be in good control lately. I know, I swear I could see your eyes roll :roll: . You are a strong individual though, someone I would like to be. It must have been really hard to deal with the physical and emotional pain you had just went thru. Much less still dealing with. I'm glad you are here, to help us all.

I do monitor my bp daily. It was running 140's/90's. The 140 was probably from dealing with stress of baby-sitter skipping out on me and worried on how she would be. I was unsure of what test they where, just said they were about antibodies and what's in the blood. I figured must be checking sugar levels since mentioned fasting. I told her I had already did that in case it was one of the test. They should be back wed-fri, nomally takes 5-7 days. I hope negative too, just want to see it to really relax. Is 20 mg of predisone too much. Its for only 7 days, 20 mg 2x for 2 days, 20 mg 1x for 2 days, and 1/2 tab 1x for 1 day. Guess toss the extra 1/2 tab?

Have a happy lounging day dear friend :D .

11-17-2008, 05:43 PM
head hugs oluwa,

glad to hear your pegs have subsided.

Rotten weather coming my way. I hurt all weekend and still am...sucks. Oh well.

11-17-2008, 08:43 PM
Poor SITC, I feel for you. Cold weather is a nightmare on the body. I hope it doesn't give more pain than you can handle, seems you've had enough already I'm sure.

Hi Oh, how was relaxing just because you wanted too, not had too? Great I hope, and from pain as well.

Well with the joint pain from the cold, I was surprised the energy that kicked in from the prednisone. I've never taken it before, my first time today. After 1hr of taking it I was wide awake :shock: and energized. Not wired, just wanting to move. I couldn't believe it. I cleaned the whole house, except laundry room. That included the kitchen, 2 bathrooms, 4 bedrooms and 2 living rooms. I even dusted off all desks and all shelves. Then went out and helped hubby detail the van. My body is so sore, yet I still want to go. I had to take another pill this evening. Will this wear off after the last pill in a few days? Or will it keep going until out of my system? I like the energy, but will I sleep? Will my body keep aching and hurting, yet keep wanting to go at the same time? That's a hard one to handle, how do you slow down while on that med? Wow, I haven't gotten so much done in one day in so long. I'm still in shock, but happy.

How was everyones Monday?

11-17-2008, 09:16 PM
Cheryl, I recognize the 'prednisone rush' in your description! I remember the first time I was hospitalized and they gave me a giant intravenous dose of steroids. I felt like I could lift a truck. But sleep---nope. It does wear off as you wean down on the dose - the shorter the time you're on it, the faster it'll wear off, I suspect.

I'm glad you're feeling so energized - careful you don't overdo, though. You may feel like superwoman, but it's still Cheryl in there!

How's the itching now? The jaw pain? Prednisone can work magic on those things sometimes. TMJ can be so awful. Do you wake up with jaw pain? Maybe grinding your teeth, huh?

I hope tomorrow is a good day, Cheryl.


11-18-2008, 07:19 AM
Hi Jody, thinks for explaining. I like the energy :D , but my poor body just couldn't keep up. I did sleep last night, I think my body just gave in and crashed. If it wears down quick, then thats not so bad. Wasn't sure how long it should help body on short 1 week dose though. The itchies are still here, although not quite as severe now that you mention it. The jaw pains still here. I don't wake up to jaw pain often. Not sure if I grind my teeth. Just be going along my day and my jaw will start aching, then pain. Sometimes no warning, like I got hit in the jaw suddenly. A little tired today, but not as bad as I expected. I did try hard to keep in mind what I would feel like today. Question, if your on this med eveyday does the enrgy feel wear down anyways. Curious, np wants to use steroids to treat my pains and itches more often. I'm just so leary of meds, they hit hard and fast. Sometimes not at all, or complete opposite of what its suppose to do.

Thanks again.

11-18-2008, 07:51 AM
Hi Cheryl Veee....

I get the rush of energy, wide eyed. This last round while sleeping I was taking Lunesta, so it was hard sleeping for a few hours and then my eyes would pop open. After a few days, I slept without interruption.

As a whole on such a large dose, for me..I felt awful inside. Bloated, tight, tired, irritable. Caused such pain with Gerdie. Very hard on the stomach...

I would be concerned if your NP wants to treat your pain with steroids more often and at such a high dose. I always find doctors are reluctant to treat symptoms with oral steroids unless severe and no other methods work. Steroids as a last resort not as a first defense.

Pace yourself..as Jody said..you are still in there. Steroids can give you a false comfort and you will be off of them in a week....so, please be careful.

THnak you for your kind words about strength...though I feel like I am not when it comes to It. I crumble many times in a heap. I use to feel strong and confident, in many aspects of my life...but this, with Lupus and all the other 'stuff' I wish I was.

You, I think you are strong...family, children, daycare, family indifference, the home, diseases. Look in the mirror, inward... your spirit...you are the person you hope to be...strong. Head hugs...


11-18-2008, 10:39 AM
Hi Oluwa, thanks for letting me know it does that for you too. My np was only thinking of a really low dose since I seem to get so immune to meds quickly. It seems to happen often, but thankfully not with all meds. The fun is trying to find the ones that don't. I've taken anti-flammitories so long that my tummy is upset easily now. I told her the tylenol arthritis is working for now. She did say good, wait and see how that goes. For sleeping I was thinking of a cheap otc med. The script she wrote for sleeping, started with A "U", was more than I could afford. I did forget to mention that to her, to see if she had one that had a generic.

I see what you say about strength in oneself, was just never good in seeing it in me. I just do what's needed of me, even though I don't want to. Makes me feel weak, uncaring and unemotional..... hard to explain. I wish I had your words at times. You seem to nail it with the right words. Some are good with words, others are not. That's life, one of my sisters is a gifted poet. Wish I could con her into publishing, they are beautiful. She writes ones for all occasions, being funny or serious. That's her gift, mines drawing cartoons and having tons of patience. My mum said I was born with patience, hardly cried and just waited to be cared for. Never faught with siblings, just let them have what they wanted and walked away. I know we are all strong, just easier to see it in others than are selves. Funny how that is, isn't it? I do wish I could make your pain easier for you. You make my emotional pain easier to bare, wish I could ease your physical and mental pain as well.

Its nice and cold in FL here, hows it there? I think we are in for a harsh and/or long winter here. There are tons of acorns and dried berries for the squirrels and birds on the ground. Most I've seen in years. Nature has its way of preparing, just have to stop and listen and watch. Part of being indian my mum jokes. Says I'm unlike my siblings, the only one who had an indian father. She said he was a nature man and very patient, says I act just like him. Never met him, had my siblings dad for my own, wouldn't have traded him for the world. Had loved him dearly, died 11yrs ago. I still miss him :( .

Well back to cleaning. Got to check my chicken cacciatore, haven't made it in awhile. Thought it make a yummy treat for a cold night tonight. Chat back later. Thanks again for your words, they made me smile. Your too kind, but still stronger than me :D . Very helpful too.

11-21-2008, 12:23 AM

Hey, were you able to get a generic prescription for your sleep aid. Just call them and tell them to call the pharmacy with the new script.

They have just started advertising Alteril, an OTC sleep aid. Maybe..maybe. Have you seen the advert?

We are our worst critics, always telling ourselves negative things in our heads. Just imagine when we say positive things in our thoughts, about ourselves. It changes our outlook ourselves and change our perception of life. We have more strength, will than we can imagine. We just have to learn to believe it...

As you can see by the time, I have insomnia. Slept a good portion of the day away. Been dosing with Zyrtec latley. Hives, hives and more hives since Tuesday...help me. Everywhere but on my trunk where I slathered on the Clobex...g-r-r-r-r. Pencil eraser size...on my arms, legs and neck. Red and hot. As soon as the pill wears off, there they are like up, down, here, there...sheesh, what next.

My husband lands today...actually at midnight Friday. It's been a long, boring, lonely week...

And how was the Cacciatore? I bet your food is yummy-o.

I am part Indian too...My ancestors on my father's side came from France and immigrated into Ontario in the mid 1800's. Mainly Quebec and filtered into the USA through Upper Michigan. I am half Finnish (Finland) and the other French Canadian, with Ottawa Indian. My Great Grandfather's wife was Ottawa.

Plans for the weekend? Us? My husband will work from home this weekend and will have the following week of...woohoo.

I am having a hankering for stuffing and rutabagas...

Enjoy the day, it's Friday...Happy TGIF.

11-21-2008, 07:27 AM
Hi Oh, so sorry you have the itchies. Will it ever ease up on you? I feel for you, had the hives once. Will never forget that week as long as I live, couldn't think and feel of nothing else but the itch.

The dish was a hit, put sweet peppers in instead of bell peppers. My mum's mostly Irish and father was full-blooded Apache. I have dark hair, medium tone skin and 5'7". My mum and siblings are light hair, fair skin and freckles, girls 5' and boys 5'6". Needles to say mum new when I was born she needed to tell dad she was unfaithful :oops: . She was honest to him, but that was the end of that marriage. Thankfully he loved me like all the rest anyways, poor guy thought I never new he wasn't my real dad. I played along, kept him so happy that I didn't mind. Although at family get togethers, I sure stand out :lol: . I don't mind, I love my family but I like the hair and skin I got. We had indian friends that tought me things, mum thought that was important for me to learn. Oh well, I tell her I'm me. Miss different and loving it. She says I have a good heart. We do get along once in a while :lol: , not to often.

Hubby coming, yeah :D . Glad he's coming in. Plans for the weekend yourself? Nothing here except food shopping, bore :roll: . I don't hardly watch tv at all, so haven't seen the ad. I'll look it up, see it on-line. I'll check it out. Funny you couldn't sleep, and I went to bed earlier than in a long time: 11:00pm. I think thats a record. Can never get to sleep before midnight, and thats on a good night.

I do hope you feel better soon. Off to the store, no kids and little miss is out of diapers and training pants :shock: . At least I have my company from yesterday still here, so I have a ride. Still haven't heard on blood work yet. Should be today, so I'll let you know. It should be neg, always is for the past 4yrs. Check in n you later.

12-06-2008, 04:51 PM
:scrambleup: Tuning in, anyone there? So bored and tired :morning: . Lil miss up all night with cold. Long day with kids and hubby. What's sleep? Miserable, tired, agrrivated........just plain moody :changes: . Got to love these kind of days. Hope everyone's having a good day. Waiting for kids to go to bed and then I'm out :puppydogeyes: .

12-07-2008, 08:19 AM
Just wanted to say it's my late niece's birthday today :cry: . She would have been 21. Hard to believe tomorrow will make 4 months since gone, it goes so fast.

Just had to get it off my chest, loved her dearly.

12-07-2008, 05:54 PM
Hugs cheryl,

I have no words of comfort, but I can give you cyber hugs and my prayers.

12-07-2008, 07:40 PM
Thanks. It's ok, I just wanted to say it out loud. No one around me is ready to talk about her, much less wish her a happy birthday. Just wanted to say it was today, and now I feel better. Just needed to mention it to make my heart happy. Happy Birthday :bday: Shelly-Belly, love your aunt.

Thanks for letting me say it here, didn't know where I could say it without causing undo pain. This post seems open to almost any topic, so thought this would be the best place. You guys are great!!

12-07-2008, 09:11 PM
My I sing "Happy Birthday" to your niece on her 21st?

Happy Birthday to you
Happy Birthday to you
Happy Birthday Shelly Belly
Happy Birthday to you

From All Of Us Here at your WeHaveLupus Family.


Sending you, Cheryl, warm hugs of understanding, compassion, and love

Peace and Blessings

12-08-2008, 05:17 AM
:D Thank You Saysusie. In my heart I can feel her smile. At least I know I'm not the only one who sang to her :lol: . Your sweet and very understanding, thank you again :) .

12-08-2008, 10:55 AM
I'll join the song - celebrating the years you had to share with your niece, and wishing she was here to share this birthday with you.

Hugs to all -

12-08-2008, 11:52 AM
Head hugs for you Cheryl...squeeze....

Happy Birthday Shelly-Belly...

They may not be here to blow out the candles, but we know our loved ones are with us, in us...they are of us and we are in them. Family.

Hugs full of love,

12-08-2008, 01:29 PM
:puppydogeyes: AAAWWW!!!!! You guys are so sweet, thanks. :D I know my Shelly-Belly thanks everyone too :lilangel: .

12-15-2008, 01:31 PM
I go something like this...

I am a mess.

Scabby and crabby,
Itchy and snippy.

I itch myself raw...literally blood spots on my linen, clothes and PJ's. I am out of control.

I've been dating a dermatologist, several times a week. His talents haven't been worthy as I still have this rash and more so. Thighs, hinder, calves, forearm, shoulder, belly, neck...so, I think I will give him the pink slip after this Thursday's reading from my immune panel that has been super glued to my back. No showering for 4 days.

I have lined up....scheduled an appointment with an Immunologist Wednesday. Maybe he has more to offer than Cociod, Clobex, Clobetasol, shampoos, lotions, bars of soap and every other steroid cream out there. My system I can tell is absorbing too much of it...bloat.

I thought too much cream especially on your face was just because of skin atrophy. I also read... it is because of the absorption rate...causing systemic issues.

Steroids are absorbed at different rates from different parts of the body. A steroid that works on the face may not work on the palm. Who knew....no wonder one worked on my stomach, but not on my arms...hummm....and no wonder the H20 bloat.

Absorption rates....
* Forearm absorbs 1%
* Armpit absorbs 4%
* Face absorbs 7%
* Eyelids and genitals absorb 30%
* Palm absorbs 0.1%
* Sole absorbs 0.05%

The potent stuff I have, reads no armpits or genital area.

My skin looks like a pizza with the pepperonis pulled off, the greasy red hole...the spot where it once was in the cheese, that is me...except that is the scabs, but the size of pencils eraser heads and pin heads...and toss a handful of hives about the pizza. Oluwa with the works.

Foolishly, I stopped without instruction all medication, believing that is causing my rash. Nope, rash is still here, and I have become a flame of pain. So hot, when I make a loose fist you can feel the heat, twice as hot like a George Foreman Grill. Grill cheese anyone. And Gerdie has left my voice horse....whee-eee-eee-ee, when I cough it tastes like tin. Like I have been licking nuts and bolts.

Resuming my meds tonight.

My spirit dims, hasn't been bright for sometime...I keep waiting, keep hoping.. the next light, the next day. There is still dirt in my hole...I haven't taken it all out..no intentions of that. Fight, fight, fight.

Who knew a rash could take over ones life. Rash, such a small symptom but it is eating my life and me literally. I want my IT norm, that is a hard enough life for me. I want no more.

Well, this is how it is, this is my routine. My life with Lupus, doctors, groans, moans and rashes. Trying to make sense out of this life...

I can't make a day beautiful, I can only take advantage of the beautiful day that was given to me..Happy Monday...

Finding my joy...hope you found yours,

12-15-2008, 04:54 PM
Poor Oluwa, so much to deal with. Ouch. Possible allergic reaction to anything? Can they run an allergy test with your blood? Glad you are starting your meds back, maybe it'll help it back off some. Sift some oatmeal in a warm bath (I use the blender, makes it more like powder). It was the only relief my son got when his skin got raw like that.

Wishing you relief and sending gentle hugs.

12-15-2008, 08:54 PM

I've tried it all....oatmeal, olive oil to soothe it. My husband says...oh, my, it is like leather.

It feels like the structure of my skin is changing....I know it is not a simple rash. I look like one of those images where I posted the link in the web link forum. My skin does not look normal....like a metamorphosis is taking place.

Changing from the drying steroids and my relentless itching too...no doubt.

The oatmeal would work, if the rash or whatever this amoeba is, was healing but it keeps growing and spreading. Most of it looks like my capillary busted outward, bleeds and scabs. Other patches are like a gazillion hard bumps that itch insanely and I also have hives too. My skin is red, when depressed it turns white. It is hot...

The old duffer, dermatologist...saw my back today, he just said, cripes. I asked, is it an infection? Nope...what is it? Trying to find that out. I don't understand why he can't figure it out just by looking at it.....

If it is a contact dermatitis...shoot, then it must be from cotton.

The panel on my back is testing for any reaction to environmental allergens. Like formaldehyde, fragrance, preservatives and etc.

I have an appointment with an Immunologist Wednesday too, the nurse said he will draw blood, and/or do skin pick with an R test, either that day or the following Monday....

I try to be chipper each day, but some days I want to rip some old dried chewy beef jerky with my teeth. It is insane..

Maybe the immunologist will put me back on Prednisone...egads...sad. A no win there.

Sleep tight,

12-16-2008, 05:29 AM
Oluwa, you poor dear....I'd offer gentle hugs, but have a feeling you'd say PLEASE DON'T TOUCH!!!!!!!
So instead....I'll suggest that maybe you are metamorphing - into a butterfly with irridescent blue wings that will waft across the sky.....

I hope your dermatologist comes up with something - QUICKLY - that will give you some relief....

12-16-2008, 05:40 AM
Hi Oh, wow again. This may not be, but is it possible your rash turned into anfintigo(sp?). My son's rash would turn skin raw when it got stubborn and wouldn't go away. Doc gave him anfintigo medicine and it just went away. Docs were unsure how he got it, but once the skin was raw it was open to anything. Maybe the predisone will make it go away. My skin's changing too. Reddish tone now( was golden), very dry and leathery. Who nows why anymore. May new doc give some relief, SOON!!

12-16-2008, 07:14 AM
Oh my Oluwa! You sound so uncomfortable right now :cry: This must be really tough....especially in the winter :cry: I really hope they can find out what is going on so that you can have a bit of relief! I am thinking of you and giving you mental hugs and sending you happy thoughts of relief. Please, hang in there and I will be thinking of you :angel:

12-16-2008, 07:39 AM
Hatlady..you can hug my head....

I think my husband feels rejected when I say don't touch, ouch, don't rub even though visually he can see it. My skin is just a mess.

This morning, I used lipstick and painted a smile on my lips, sides turned upward....

Butterfly....you sent me there in my thoughts....awwww. I would love to fly, to feel the wind against my skin..to hear the air rushing past and over me....whoosh, whooosh....floating so effortlessly against the baby blue backdrop.


Same rash, just evolving, growing. No, not impetigo. Where the open holes are it hurts deep in my skin. Like a hard core down in, you can feel the hard core.

I think the steroid creams are doing more damage than good at this juncture. Drying my skin plaques, lifting them, exposing them....too much chemicals. And too all those creams have those 57 cent words of chemicals.

The hives are small...rise and fall like the hammers in a piano as it is being played.

Maybe it is something I am eating. I weeded out all the preservatives, additives, dyes. I did a thorough research of words I could not pronounced. Gosh, one would be amazed how much 'stuff' we unknowingly ingest and use on our bodies. That is why I tossed the drugs..had things like..... povidone, propylene glycol sodium lauryl sulfate, titanium dioxide, polyethylene glycol.....

And after you screen the products, well basically there is nothing left to use or eat not even the pure driven snow.

Maybe it is from stress...the more I think of it, it seems to get worse. Perhaps allergic to my skins sweat? Maybe I have caca in my blood. It probably is something so simple....

Have you had you thyroid check...it can change ones skin, CV?

Help again is on its way..Wednesday...another Derma appointment and in the afternoon Immunologist...

I keep being hopeful, even though I feel woeful.

Enjoy this day, you two...

12-16-2008, 10:03 AM
Hi Oh. It was a thought, even though I didn't think that was it. You never know, so best to ask. Ask for an allergy test anyways. They take about 4 tubes of blood and takes 4-6wks. We could never find common ingredients in our son's food and bath products, but the test did. He was allergic to soy, couldn't ingest it or use it in bath products and such. We had to speak to an Allergy Specialist. Turns out that one ingredient may have 5-15 names, all completely different in spelling. All mean the same ingredient though. Told us that reading labels ourselves would have never found it. Also once he had a rash, if we accidentally used a soap or lotion with soy (or ate soy in his food), the rash got worse and raw. The impetigo, we were told, could have just been from his own nails. Unfortunately the raw rash is difficult to sooth, but hopefully will be short lived for you. Wishing and praying that your rash goes away. Very gentle hugs dear friend.

12-16-2008, 11:49 AM
OK Oluwa, here's a HEAD HUG!!!


Cheryl, it must be terribly frustrating when you try to do all the right things and your child STILL has problems. Why can't we just call ingredients what they are? Soy is SOY.

Well, back to work.....my day is coughing (left over cold), watching the snow start to fall (4" today???) and trying to slog through a desk full of paper.

12-16-2008, 07:29 PM
Hi hatlady. It was very hard, but thankfully he outgrew his allergy. On the bright side, I learned how to cook food from scratch. Found my joy of cooking thru his allergy. I still make the from scratch breads, cookies, pie crusts and pizza doughs. My favorite is home-made chicken pot pie. Takes about 90 minutes from start to finish, but I do love the smell and the golden color of the pie crust. Well, I better shush. Making myself hungry. It was warm here, 78. Hope it cools back down soon, love wearing the long sleeves. Paper work get done? Hope your day went well.

12-17-2008, 10:11 AM
Oh my Sweet Oluwa, I had no idea that you were still dealing with this rashiness. I am so sorry.
Doc says it not an infection? I had a skin infection this past summer. Folliculitis he called it. Steroid cream and antibiotic cream. Took forever for it to heal. Itched like the dickens. Wish yours could be remedied as easily.
My Christmas wish for you is healed skin as smooth as a babies behind.
Praying for you hard my friend.


12-17-2008, 10:49 AM
Hi Cheryl

paperwork NEVER ends - but I feel like i made a dent yesterday. Can't say that for my cold....slept in this a.m. and even the extra sleep didn't help!

We do a lot of scratch cooking - but little baking. Used to do our own breads, but got away from that (sadly!). Your chicken pot pie sounds heavenly - I've been hungry for pot pie lately, it is a good winter comfort food. Am planning on making a veggie pot pie - - and will think of you when I do! Any hints on making a wonderful one?

12-17-2008, 06:37 PM
Oh my we love it but I havent found the right recipe can you share yours please?


12-17-2008, 08:27 PM
Hi ladies. Don't mind sharing. I'll get the recipe out tonight. I use frozen mixed veggies in mine, makes it taste better. I also double crust, love the bottom crust. Was thinking of making one myself now, although I think I'll buy the pre-made crust. Treat myself to less work.

I have 2 recipes, one completey from scratch and one with short-cuts. Which would you ladies like?

How's the paper work today hatlady? Any more dents? Try honey 3x a day, took my cold away last week after 5 days. My first cold in 10yrs, it was a rough one. Hope your's gets better.

Hey Oh, how did the appointment go today?

12-18-2008, 06:35 AM
Oh Cheryl! we'd so love to have your recipes!!!

Making a dent i the paperwork, and now wondering if I'll be here tomorrow - there's a BIG storm set to hit later today, we could get as much as a foot of snow. That's on top of the 4-6 inches we have already! That's better than a bit south of here - they could get 1/2 inch or MORE of ice. I'll take snow over ice any day!

The good (??) news about paperwork is that it is always there. If you don't get it done one day, it will surely await you the next... and the next.... and the next... :roll:

As far as the recipes, I don't mind doing it all from scratch - though I'll agree that a pre-made crust is a good idea.

I remember one thanksgiving when I made a whole wheat pie crust. The pie was wonderful. The crust was soggy, tough cardboard consistency. Ah well. I've pretty much purchased crusts since then! :wink:

My cold is a tad better today - I'll start in on the extra honey and see if that helps the throat and cough - - been doing that once a day. A few more doses is ever the sweeter!

Hugs to all - now to get back to the....sigh....paperwork!

12-18-2008, 08:02 AM
Hi hatlady, sounds like maybe running the day-care here may be better than all that paper work :lol: . Although it sounds more reliable than wondering how many kids you may have for the day, or will I have any :? . Joys of home bussiness :roll: .

OK: from scratch

A double pie crust recipe (most cook books have the recipe)

1 tbs oil

3 cups of chicken

12oz frozen mixed veggies

1/4 cup butter or margarine

1/3 cup flour

2 cups water, or chicken or/ veggie broth

3/4 cup milk

1/4 tsp celery salt

sea salt and fresh ground pepper to taste

Cook frozen veggies for 7-10 minutes, drain and set aside. Heat oil in pan on med-high, toss in cubed chicken. Cook until lightly brown, remove to bowl. Add butter, melt then add flour and cook very little. Add water/broth, milk and celery salt and sea salt and pepper all at once. Whisk gently, scrapping bottom of pan. Cook and stir until thick, then add in veggies and chicken. Cook another 2 minutes, remove from heat.

Place one crust in bottom of pan, then pour filling in. Place the other crust on top and and crimp edges, then cut slits in the top. Bake at 425 for 20-30 minutes, then brush with butter. Let it set for 15 minutes before serving.

quick recipe:

2 pk pre-made pie crust.

12oz frozen mixed veggies

3 cubes chicken

1 can cream of celery or cream of chicken soup

1 cup water

pepper to taste (soup has salt already)

Cook veggies and chicken as above. Add water and whisk, scraping bottom of pain. Add soup and mix well. Add in chicken and veggies and stir.
Place pie crust in pan, pour in soup mix. Place top crust on and crimp, then cut slits. Bake 10- 15 minutes at 425.

Hope I didn't forget anything. Have a good day everyone.

12-18-2008, 06:48 PM
Oluwa, I keep hoping to read your itchiness is gone. What did the doctors say yesterday? Did you learn anything from the derm. or the immunologist? You are always in my prayers, and I'm envisioning you without a bump, a lump, or hive or a red welt! Hugs (very soft ones) dear friend.


12-19-2008, 06:58 AM

Can't wait to try your recipe Cheryl! I'll go the "scratch" version as I'm not much for canned soups. Not THAT much more difficult either.

But I"ll admit.....I'll use the premade crusts!

Now, we delayed opening of school until 10, and it is currently ice-raining AGAIN. At least we didn't get the 8" of snow that were predicted. Most of it was rain. I'll be heading out shortly....

OK, all for a chorus of...
"OOHHHH The Weather Outside is FRIGHTFUL
But the fire is so delightful
No matter the cold winds blow....

Let it snow let it snow let it SNOOOOOOOOOW! :lol:

(Those probably aren't the right lyrics, but what the heck!

12-19-2008, 08:09 AM
Hi Hatlady, your welcome. I'm buying the pre-made crust too. My hands just can't handle working with the dough during cool-cold weather.

Enjoy your paperwork :lol: , may you not get buried in it.

Cute song, I think those are the lyrics. Haven't seen snow in FL since '89. It does lightly here every 15-20yrs. Enjoy your day.

Angel Oliver
12-19-2008, 08:50 AM
Just saying hello to you all. I am a newbie and I fully mirror the first page! Also im hungry now after hearing 'crusts' mmmmmm. I hope you all have a good day.

Love Angel.xxx

12-19-2008, 03:40 PM
Hi Angel...xoxoxo

Welcome....I know doesn't chicken pot pie sound yummy. I just copied and pasted it to my recipe file. Name CV's Chick Pie...

Kasey....thank you for your well wishes and prayers. What was replaced with the words Meat Flute in your post. I can only imagine. The only think I can come up with is a 'peter'....lol.

In short....everyone..


Rash is kicking my scabby hinder.

Dosing with three anit-histamines, it took the hives away.. Been through many different trial toothpaste size tubes of steroid creams. Nadda still a mess...still the rash spreads like Heinz on a vertical porcelian plate. Slow but covering every inch.


No answers, no diagnose....from either the dermO or immunO. Waiting on blood work from the immunO. Monday. Another skin biopsy schedule for the 29th if I am still a red, scabby bump...

Christmas tree is still at the lot, unpurchased. Yet to make it there.

Christmas is in my heart and spirit. Jesus Christ, candle lights...love, blessed despite icky skin, IT and all its cronies.

Let it snow, let it snow..let it....It is hot, humid and gray here in SC...

Love, hugs and all that good gunk.
Keep well..be well..enjoy the weekend...


12-19-2008, 09:44 PM
I didnt notice that. LOL!

It was the word that comes after Charles as in Tiny Tim and Scrooge. D.I.C.K.E.N.S.

It itches like the _________.


12-19-2008, 09:46 PM
What the heck. Maybe a space will work?
D-i-C K-e-n-S

Hows that?

12-19-2008, 10:00 PM
Meat flute... :shock:

I laughed so hard, Kasey and I still am when I think about it...play my meat flute..roaring over here...

Getting ready to turn in, turn down...drop my night time prescribed anti-histamine, Xyzdal. I have wild vivid dreams from them. Keeps me from scratching like a dog throughout the night...

Sweet Dreams...

12-20-2008, 12:48 PM
....I"d wondered about that Meat Flute.... thought Hmmm....there's a phrase the old hatlady hasn't heard..... :wink:

12-23-2008, 10:02 AM
:x-mas: Happy Holidays :smilecolros:

12-23-2008, 05:56 PM

Sending my cat Hogan over to scratch your hinder for ya...he has three multiple paws and is very tallented.

If you lay on your tummy he gives a very good back rub.

He does have an annoying habit of standing with all four paws on "THE" sorest part of your body and likes to curl up and sleep on your head at night.

I'm a sound sleeper, so I do wake up with the most interesting hair styles by master Hogan.

Angel Oliver
12-23-2008, 06:19 PM
i am just chuckling cause my cat head butts me when he's cold to wake me (usually just when ive just got to sleep) so he can get in bed with me.Then he puts his cold paws on my bum.When he stretches out he scratches my bum lol.I have strange scratches in strange places lol. Then like you when i wake up (if im lucky enough to sleep) i have a new fur hat...all warm with usually a paw in my mouth......classy look!!! :) xx

12-23-2008, 09:28 PM
Hi SITC, I may want to borrow your dear Hogan. Got those phantom itchies you feel, but do not see. My 2 lil kitties love sleeping in my bed too. Thankfully not in the hair like yours and Angel's (so could picture the paw thing :lol: ), but right by my head. They do keep me awake, one by always stretching (right into my face or chest) and the other with his purring. He sounds like a bumble bee on steroids.

Hi Oh, how are you. Feeling better myself lately, coming around out of my hole somewhat. Made cheese cake and 2 brownie cakes today (one regular and one w/ peanut butter mixed in the batter). Tomorrow making choc-chip cookies and black-eye peas that'll be slow cooked over night in the crock pot w/ bacon. Then Christmas morning a ham, glazed in a honey-pinnapplea-cherries spread and some rice for the beans. I forgot how cooking and baking makes me happy. Kind of bringing me around some. Taking it all to my mums for a surprise. Also got her a digital photo key chain for a present. It was only $9 at Big Lots, going to see if they have more after pay-day. She has so many grandkids, 21 w/ 2 on the way. Happens when you have 10 kids. 2 still have not married yet, just imagine when they do too :shock: . It holds 120 photo's, thought it be good for her. Joked she needed a book bag just to show a photo of each kid and grandkid :lol: . This at least will fit in the purse better, more stylish :P .

Hope that itching has subsided for you. Your in my thoughts and prayers. Merry Christmas sweetie :D .

P.S. Always willing to give recipes if anyone interested :D .

12-24-2008, 07:17 AM

My hinder, my back, my calves...can he, Hogan do it all?


12-24-2008, 07:21 AM

When my Pookie was little, in age and size she would wrap herself around my neck like a fur collar. Now she, 13 and is too fat, 17.7 as of yesterday to make a leap into the bed...the only thing that gets her climbing the stairs is a crinkling sould like a bag of chips...she runs...

Eh...eh...panting...exhausted...meow, meow...

17.7 is very big on her as her front legs are about the length of my thumb.


12-24-2008, 07:28 AM

Reading you food...is literally making my belly growl. Peas and cookies, ham, in honey...wow, wow...what a surprise they will have.

My menu is basically the same for Thanksgiving, just changing the entree' to a glazed ham and brown sugar gravy. Oh, and no pie...pineapple upside down cake with heavy cream, whipped for my husband...and for me, pecan and caramel ice cream. Haagen Daz.

Oh, and cole slaw...humm...what was same about it. Oh, the spuds and rutabagas......lol.

Your mom will love it...and for the price, you love it too...Great gift idea.

Still itching...

12-24-2008, 07:42 AM
Wishing you all a very, very Merry Christmas....

My gift to you...Prayers for wellness and love and thoughts in my heart of you all.

In Jesus' name I ask, please, let your bodies find peace with the disease. Merciful Jesus, during Your life, here..on earth You showed great concern for the ill. Please... have compassion now for all those who are sick. Please, heal their body and restore their strength and spirit. Thank you Lord, Jesus Christ. Amen...

Head hugs..all around...and another round..squuueeeze..

Merry Christmas.... enjoy.

12-24-2008, 07:53 AM
Hi Oh, so sorry your still itching. Is it at least easing some?

I've never done a Christmas dinner before. Just thought I'd do it for her, the way her mum did on Christmas. The peas are her favorite, used to have them at least once a week growing up. This surprise is a reward, she finally quit drinking after almost 40yrs. She used to drink every day, then a few years ago cut down to a few days a week. Now she finally got tired of it and quit entirely. Told her I was so proud, thought I'd show it too.

My mouth watered when you said pineapple upside down cake, yum. The one cake I was never good at making, but so one of my favs!!!

Thanks for the prayer, may it bring you relief as well. Have a Merry Christmas, wishing you well :D .

Angel Oliver
12-24-2008, 12:31 PM
Hi everyone,

I was just chuckling at Pookie, how cute :) My mouth waters when i am in here......f o o d...mmmmmm. And im hungry, but can not eat much.Major jaw problem at the moment.Cracked a tooth n filling come out....nerve city.Went to dentist Monday had a tooth refilled.....i cracked it again n filling has gone this morning.Im on anti biotics for the jaw,gum infection and awaiting to see the emergency Jaw consultant. So much nice food here and i read your recipes....food is everywhere lol and i want it lol. I have total face ache lol. I go away day after boxing day for a week....think i may have to see an emergency dentist waaaaaaaaaaaaaaay before then.Hot drink ,cold drink,soft food ouch.Sorry to go on a bit....but ouch! lol .

01-05-2009, 11:01 AM
And how is the first week of New Years thus far everyone....celebrating, mending?

The sun is being absorbed into all that is brown here...feeding it life, nourishment for our Spring. Frost wiped out many of my evergreen southeastern shrubs. Hopefully they will reclaim their lives and return this spring. I wish, well, sometimes we were covered in snow like some parts of our country up north. Cold, fresh....and pure....hearing and feeling the crunching of the snow under each footstep. Today I had awaken to a water soaked messy yard as if it the snow had just melted, retreated and uncovered last summer's dormant grass. Showers came in last night...

The new year began not without an itch...still clinging to me as I dose with Prednisone. I was hoping to wrap up last year and enter the new year without a bump. I'm still healing from the wounds my nails caused. Even with stubs, cut to the quick I managed to relieve the nagging itch. My flesh looks like a polka dotted canvas…covered in finger tip bruises, browns, blues and yellows. Polka dots...some old, some new.

Tests are pointing to a gluten reaction, skin biopsy still pending, waiting the results for dermatitis herpetiformis. My body is in high allergic reaction mode. I suppose a term meaning..we don't know the cause yet. So, I've been on the look out for hidden gluten...natural flavorings, colorings, dextrins and etc lurking in the shadows, masked in some fifty cent word like triticum aestivum...'club wheat'...

I've let this insane rash consume me...searching for answers from doctors, Internet to my kitchen cupboards. Slathering on concoctions or just by themselves... olive oil, vitamin E, fresh aloe even vinegar as the steroid creams were not working. Back on Prednisone..ugh..but my joints thank me.

I will conquer this rash and when it has been defeated onto the things that are on the back burner, my girlie pear, fun, living....

A new year. I remind myself...life is raw, filled with suffering…suffering that draws out the compassion and to appreciate all the world. All that is so sweet. All that is so beautiful in the people, in nature…Life...reality, yes, indeed. Deep breaths...here I come 2009.

Happy New Year...life is found in the present and not the past. Be well, everyone.


01-05-2009, 05:14 PM
Head hugs Oluwa

Are all the tests in on the gluten? Are you headed for a Celiac's diet? There's lots of info out there and there are some great support offices that have shopping guides.

Sorry the itchy scratchies are getting the best of ya.

Handing you a sand paper covered brick....GO FOR IT!

Love ya babe, hope you are feeling better soon.

01-05-2009, 08:29 PM
Hi Oh, that is one relentless rash :shock: . Preds working good though? Sure hope so.

Hope the new year brings great things for us all.

Still fighting a cold. 2-3wks now? Tried the honey, normally works for my allergy coughs and sore throat. Not this time, seems to be getting worse. Doc did say that it would be rough, since I haven't had a cold in 10yrs. I am going to give it another week, then call doc if still no better. I feel as if the side of my face wants to explode. What a way to ring in the new year, life :roll: .

Hugs and smiles to all, happy new year.

01-09-2009, 02:20 PM
HI Angel Oliver...Pookie is really cute in person too. I love her. How are your teeth? December 24...how did I miss that. I've been so lax in my posting and reading, sorry for not asking earlier. ...Hope you able to enjoy eats again.

How has your New Year been?

SITC..Rake, sandpaper I'll take it all....actually the rash is starting to retreat with the scaryoids and antibiotics...and free of gluten..

Still dry from the chemical reaction to all those steroid creams. The old duffer was trying to burn it out not heal it...

I do have a copy of my results in hand..seems like a weak positive for something in my blood...

Let me bore you with the numbers...

TTG IgG Ab is 6. Range 6-9 weak positive. This is a gluten test I believe.

IgE is .35 Low Level. Some antibody is in me, allergy..Doesn't say what they were specifically looking for...like latex reaction, gluten and etc...humm.

EOS 8.4% High Normal Range .0 - 5.4% This is an allergic reaction.
MCHC 30.3 Low Normal Range 32.5 - 34.8 g/dl Anemia.

The capital E's, A's, G's...the alphabet with these allergic testing throws me a curve. I am lost. I ought to schedule an appointment with my PCP ..maybe he and I can go over the results.

And too I was taking Zyrtec so wondering if that flubbed the results...

Skin biopsy results on the 13th.

How goes life with you?

Seems everyone has petered out, me included.

Keep well...be well.

01-10-2009, 02:26 AM
Hugs Oluwa,

Has your doctor told you to purge your diet of gluten?

My sister has done very well on the gluten free diet. She says she hasn't felt this good in years.

Once she got in the habit of shopping for gluten free products and how to check for it, she saids it's just habit now.

Last year we went to an auction at a local pub to raise funds for my two nephews' hockey team.

We were having such a good time .... well we forgot ourselves and ordered up a big pitcher of draft beer and a big ol order of "HOT" breaded chicken wings.

Funny....it wasn't until we had sucked the last chicken bone clean and swigged the last of the beer down that we remembered beer and breaded anything is a BIG NO NO!

Boy, did my sister ever pay for that over the next week. But she said it was worth it.

First time years she just let go and relaxed...but she did learn her lesson and is not tempted by such things as the price is too high.

Hope you are feeling better soon :)

01-10-2009, 06:50 AM
Hi all;

Just checking in after a wild first week back at work. Lordy are the alligators hungry....snapping at my earlobes.... when they get too nasty I just go out to our main part of the office and get a chocolate left over from Christmas. That and another cup of green tea....and I'm ready to battle again! 8)

Oluwa, it sounds like you're making progress on that miserable skin thing - gluten free might be your salvation! I've heard it takes several weeks to really see the results of that diet, but keep at it - - oh to have smooth itch-free skin again!

SITC, "falling of the wagon" is something everyone has to do now and again...for me it is bacon. Since I've taken meat out of my diet, I've felt a lot better. Now I don't even care about burgers, steak, chops...etc... but bacon? If we are eating out and my SO gets an order for breakfast, I'll nip about 1/2" from the end of a crispy piece. That much is OK. If I get over-gluttonous and take a whole piece - oh my.... the digestive system tells me about it. And I ACHE too! But some days that taste just gets the best of me....sigh...

They need to make salmon bacon! :wink:

01-10-2009, 07:18 AM

My dermO suggested as I brought up the topic of gluten free, because the itch, the burn is so intense. And he said it wasn't contact dermatitis, eczema...the usual culprits because it wasn't responding to the high potent creams.

I swallow chunks of bread from a round loaf... Publix Mulit Grain. YumO too. Ripped with a glob of Albacore tuna piled high to keep the gluten flowing till I had the skin test....I read that it was important to keep eating the poison.

I find I really ate very little gluten as a whole because I avoided, minimize my wheat intake and prefabricated foods.....but when the rash broke out, while my Mum-in-law was here..we were eating cookies, cakes, breads galore. Then my road trip to the UP. Life would not exist without cardamon breads, fried whitefish fish, beer there.

So, I was throwing down and then continued when I returned home, especially on the Publix's roound loaf. I use to limit wheat products when I thought I had an wheat 'germ' intolerance but it seemed Plaquenil had tamed the bloat and disruption in the digestive track..

I was thinking when I had the scabby hinder and lower back, perhaps that was also from the ingested gluten. ...Hidden in a beer...licking the spoon from my husband's favorite...cream of mushroom soup chops on the late nights I waited for him to come...natural flavoring. Malt vinegar...

Hey...the same name brand product like Lea and Perrins Whatsthisheresauce....Worcestershire sauce in the USA doesn't have gluten but in Canada it does? No explanation.

My dermo is an old fart duster. So old he farts dust. Sometimes I wonder, did he keep prescribing those acid skin burning steroid creams each week to show the University his value, that he is needed in my area to the medical department. Must be 70...and well, he shuffled along.

It was terrible rash scabs underneath, on top of the steroid chemical burn....that even the emollients prescribed burned. That was upsetting to me. I said no more creams. So, I was left to deal with three skin conditions. Rash, the steroid burn and hives.

I guess they make gluten free beer...I would miss my every now and then red-eye beer. I too like to twirl a wing drumette around. I make fried chicken without flour...and buttermilk with flour.

Hope all is well with you, your pear...work....

Enjoy the weekend. I feel good this morning...so I will too.


01-10-2009, 07:24 AM
Yep, progressing along Hatlady....

Gluten free, prednisone..antibiotics..help is on it's way. With the lessening of the itch, my spirit shines brighter. I was dimming out and fast too there for awhile...

Don't let the gators pull you under and roll...enjoy your much needed weekend...


01-24-2009, 08:34 AM
Humm, I thought I posted my biopsy results. Well...I wasn't so pleased with the doctor....

The doctor flubbed them. He order a standard skin biopsy and not the immunofluorescence test for gluten sensitivity. I asked him why? He said, because it is expensive. For whom? Me? My insurance? He just stood there, the old duffer. No reply. I reiterated..my insurance... he replied I don't know anything about your insurance. Then me?

No response and changed the subject and suggested I go to the MUSC to be evaluated by three doctors at a time. Some grant study program. I suspect like "House". I interrupted where would you get the idea it was too expensive. No reply.

I have the high plan premium insurance as to cover any doctor I want to see, not just a preferred. Do I poor and hungry? Actually I think he seen he had goofed and tried to look for an excuse in his doctor bag....and came up with the cost being the factor.

For verbatim....my results.

Comment: The microscopic findings are those of a dermal hypersensitivity reaction associated with focal epidermal necrosis. The presence of a mixed infiltrate with a prominent interstitial component and numerous eosinophils favors arthropod assault reaction.

Arthropod? Favors bug bites? After presenting me with the results the dermO said it is not bug bites. An incompetence lab or because the doctor didn't request the right test...dunno....

It is also reads.

Microscopic Description: Histologic sections of this punch biopsy of skin show normal cornified layers. Very focally there is an area of edermal necrosis. Beneath the site there is a perivascular and interstitial mixed inflammatory infiltrate consisting not only of lymphocytes, but also neutrophils and eosinophils. Eosinophils are prominent with the interstitium within the deep reticular dermis...

So, there it is....mystery solved? I don't think so...scabs, rashes and hives for 4 months?

The wounds are healing, purple and red scars the size of black peppercorn seeds, hundreds..polka dotted skin. The chemical steroid burn is healing but I still get the hives when I lapse in my steroids. Wondering what will happen when I stop dosing...

Being totally gluten free, preservative free, dosing with antibiotics and steroids I think has been my healer. I believe it is indeed DH. Looks like it, acts like..made me miserable like it..

The MUSC did call for the study, I declined. If they can have an old fart in the profession who is incompetent to recognize a chemical burn I pass. Makes me wonder what he learned from his patients and what he had been treating for the last 60 plus years. Nothing? All he had to do was look at skin all day. Maybe all he really does is Botox, chemical peels behind closed doors..Ka-ching?

My experience since being in this area, I have no confidence in the medical professionals..least none of the ones I have encounter. Too many errors...too many patients. Just another business....sigh.

Enjoy this day....

01-24-2009, 08:58 AM

Why can't Doctors simply admit they made a mistake and then fix that mistake. People who are incapable of admitting they made a simple mistake really piss me off. Maybe it's their ego. I don't get it. Sorry to hear this is happening to you.


01-25-2009, 07:53 AM
Hi Oluwa,

I'm glad the gluten free is starting to help - amazing what our bodies decide is good and bad for us!

01-25-2009, 08:19 AM
Rob...I am doing fine. I feel a bit ruffled at times because much of this could have been avoided with proper medical care.

And once I am off the oral steroids, as they can be very skin drying, the dry denim feeling skin should start to retain it's own moisture...Gosh, I hope...

Whats white, hairy with red and purple polka dots. My legs. Hard to shave a terrain in that condition. So, many issues on my plane, skin. I hope by summer I won't be too conscientious of my skin.


Me too. I still get frustrated with her..my body, but I try to look at it, like I am taking care of her. That helps me mentally, somehow...

Happy Sunday...

01-25-2009, 11:30 AM
Head hugs Oluwa,

Did you contact your local Celiac office? They have great little booklets full of no no products which gets updated freaquently.

Such as colgate tooth paste...bad bad bad.

Processed meats, sandwich meats, are coated in a watery mixter that has flour in it...who knew?

They also have a list of local restaurants that have gluten free menu's. My sister loves this, she can go and eat out and not worry.

Cheers, hope you keep feeling better.

01-26-2009, 01:47 PM
Hey SITC...squueeeeeze

Thank you for the direction. Isn't it crazy..in toothpaste..brush my teeth with a bit of cud...grasses. Crest got the okay...

I did buy two books and printed out many sheets of those unknown, unable to pronounce ingredients, saying it is or isn't gluten free.

I am just so elated this rash is coming to a close. It has consumed enough of my finite life. Honestly, I felt I was on the brink of madness..the never ending burning itch. My skin had an insatiable appetite to be dug out. It was exhausting restraining myself....

And best of all, I had my first warm shower yesterday. Ah, my skin didn't burn all over from being an open wound anymore. Always cool or cold water, tamed the itch and burn...

Though I didn't take a Hollywood shower..long because my skin is still dry I enjoyed every warm wet droplet and no sounds of ouch, oh, owie.. came from me except ahhhhhh. And slathered in a vat of carrot lotion, all junk free

And how was work today...

Be well...enjoy the evening

01-26-2009, 06:15 PM
:BIG: head hugs Oluwa

I'm so glad something is working for you....YAH!

If you are missing bread ... check on line for local celiac bakeries around you.

Halifax is not a big place and we have three gluten free bakeries...

Word of worning :lol: baking your own gluten free bread is NOT easy.

I tried to make some dinner rolls for my sister....hahahahahahaahahhaaha

It did NOT go well.

I could build the third little piggy a really nice brick house!

01-26-2009, 08:58 PM
Oh, Sits

You made me laugh big time..............

:lol: :lol: :lol: :lol:


Lori :P

01-27-2009, 03:05 PM
She, SITC makes me laugh and smile too...

SITC...So, how goes life?

I did buy some rice flour. In hoping to make what? Seen it on the shelf and I said why not. Maybe roll a chicken breast in it? Wondering if it will taste like over cooked rice...starchy and sticky...

In a twenty five mile...just did a search there is one bakery and one grocer, both 25 miles from me. Though Charleston is a well known city...a port, an old historic area it is actually too quaint. Not much in variety in shopping, specialty stores or ethic foods. Oodles of franchise restaurants and Chinese buffets, which is fried foods with colored sugar syrup pour over it.

I did unknowingly eat gluten the other day and I have been so diligent. Corn Flakes...for some reason I thought they were safe, found out today they were not. Wondering why I sprouted three sores.

From my reads if it is indeed DH, if gluten was consumed the effects can take up to three weeks to appear. Not an overnight skin reaction..so I wait...hoping it doesn't get worse again..

I popped in a DH forum and many say they just get a small reaction when ingesting small amounts. Relief reading that...

They say many foods have gluten in them..what makes them gluten free, is they are under the minimum enabling them to say gluten free.
I just ate about a half cup..Kellogg's says they can not guarantee gluten free being as they produce wheat products. Which makes sense...so who knows where I got the information or idea it was...

I do miss the rip, crunch chew of my favorite round loaf. But I am scared straight...the rash is frightening, maddening so not eating it hasn't been so difficult. Once bitten twice shy.

Enjoy the night time...

01-27-2009, 03:45 PM
Oluwa, you're about to make the same mistake I made with my bricks oops I mean dinner rolls.

You can't just use rice flour. It's got to be a special blend or rice flour, potatoe flour and a third one which I can't remember at the moment.

I just found this site http://celiacdisease.about.com/od/cookingglutenfree/a/FlourBasics.htm

Check it out....hope it explans things a bit better.

01-27-2009, 03:50 PM
As for how I'm doing :P

I'm a flare looking to happen.

I'm exhausted, over worked, over fed, under excersized.

There are only three admin staff, each of us has our own duties, there's no over lap.

Well one of the ladies is quite sick and is off on 7 weeks leave. My heart goes out to her.

Having said that, the dough heads that run our office have decided NOT to bring in extra help :mad:

I stretched right up the middle and have had to cancel an important eye exam.

Grrrrrrrrrrrrrr r r rzzzZZzzZz

01-28-2009, 02:46 PM
Hey SITC..

I did check it out. Thanks for the tidbit, I would have never thought about the chemistry involved in baking to that degree.

Thank you for sending me into an all new direction as this morning I felt a bit somber, thinking about my fish batter. Beer and flour....which sent me looking for gluten free beer....then it topple, heavenly I might add into the confections sites....

Flare..you know what you need to do. Slow down, breathe, break..make each food choice count. Put yourself, your health back on the list. Fit you in there...somewhere.

Have a good evening..it is Hump Day..Wednesday..weekend is almost near.

Head hugs.

01-28-2009, 04:37 PM
We've got a flipping snowstorm tonight :cry:

Another night of worrying...how much snow...how quickly can we get cleared out so I can get my butt in to work to take phone calls from everyone else saying they wont be in....ironic...aint it?

As for the merry chase looking for bread recipes :lol: driving 25 miles to get to a gluten free bakery is looking pretty darned good about now, isn't it? :lol: :microwave:

01-30-2009, 06:35 PM

Did you tunnel yourself out and pop out at work?

I am about tired of winter...no snow here, just brown, dark brown and many shades of gray...and cold, though not as cold up north. 20's at night...by day, 40's.

I want to swim with my fins...see my garden beds bloom with Lilies, Dahlias...Camellias...and more. Smell the fresh mowed grass...and get fresh fruits and vegetables from the road stands...

I did buy some glubie-free crackers...big enough to hold a gob of my albacore white tuna.

It's Friday, when does your 4-day weekend begin? This weekend or next...

Enjoy this one...milk every hour, make every minute about you...

Happy TGIF..

01-30-2009, 06:39 PM
One more week then a 4 day weekend if all goes well.

:lol: even if I do get the time off, hubby has decided to start building a second bathroom in the bacement. Hmmmm wonder how much rest I'll get. Maybe work would be more restful. hahahaha

Best layed plans of mice and lupionians.

01-31-2009, 01:12 PM
Sits, I think the operative word is HUBBY - he wants a bathroom in the basement, HE builds it! (Yes, I know it doesn't work that way, projects have a way of being black holes, sucking in everyone within a household radius... :roll: )

Oluwa, thank heaven the gluten free is working. I"m sure you'll learn the tricks of the diet quickly - you're motivated!

It is nice to spend a bit of time on the board again! Now who knows, it may be anothr week before I can get back. Alligators at work seem to be multiplying - I have no idea how I've gotten so much MORE work in the last 4 weeks. If the year is going to continue like this, my hwole department is in trouble. We'll find ourselves some friday gathering around a table and just melting into puddles of exhaustion and draining out under the door...

What is it with this year, has it been one 31 day long full moon? You'd think so by the things that have been coming up.... :roll:

Anyway - hugs to all!

02-01-2009, 05:29 AM
HUGS hatlady

It's great to see you posting. I hear ya on the work gators...been struggling to keep them off my toes too.

How have you been?

02-01-2009, 05:52 AM
Been good, Sits. Last week I managed to go to a yoga class that is actually for the students, but if they have room faculty and staff can go too. Was intense stretching but the instructor made sure we didn't "exceed our capacities" Will do that again this week. But that's only one day! I practice a bit at home....and do get in my exercise. So even though the work's exhausting right now, I'm coping pretty well.

Sounds like your work has been "interesting" as well - covering for coworkers is something that's do-able....for a SHORT time. But SEVEN WEEKS! I hope the dough head who runs the office is allowing for some duties to fall through the cracks. After all, you're only (super)human......

Get that eye appointment rescheduled. Take the time away from work to do it. SOON! You need to take care of yourself too - as you said, it gets to a point where you're a flare waiting to happen.


02-01-2009, 02:41 PM
yep I need some R&R, my body is protesting already.

I was quite misserable yesterday afternoon.

We'll see how things go this week. Keep your fingers crossed.

02-03-2009, 08:31 AM
Not counting today is it 4 more days till a 4 day weekend...Saturday to Tuesday or is Thursday to Sunday, SITC?

Hatlady, SITC...I don't know how you girls do it. Before when I worked I would push through the fatigue and pain, now I just nap. In my office, if I still worked I would be a heap under my desk, sliding off my chair into a crumpled mound or hanging like a winter coat on my coat rack..like a body without muscle or bones. Just a piece of garb...

Yeppers, Glub free..good not only to the skin but the digestion too...end to end. :shock: . I've had few skin eruption from not knowing I ate the glub...I self diagnosed.

My skin is extremely dry and desensitized. Those steroid creams were some harsh stuff. They frazzled and fried my skin, like pork fried rinds. I still can't retain moisture. My skin doesn't feel alive where ever I applied the chemical but also easily to irritate from lotions, even water...ugh.

And I am off the scaryroids...dosing with antihistamines still.

Will my skin be sensitive again, or feel soft material again? I miss it...

Hope today was a happy, joyful waking day...mine has...

Happy, happy, joy, joy...

02-03-2009, 12:17 PM
hmmm Oluwa, I'm tempted to rub ya down with olive oil and wrap ya in plastic. Get ya all soft and supple again.

I went in to work this morning and came home at noon. There is a big snow storm that started mid morning and I really didn't feel like struggling to get home tonight....so I told my manager "do to a lack of interest and anything interesting for me to do I am taking half the day off sick"

She laughed and told me to go ahead. It's very quiet in the office today and there truely was nothing for me to do....so YAH. I feel a nap coming on :)

02-03-2009, 01:54 PM
SITC...Enjoy the nap...I've been taking many daily. I suspect from the small handful of anti-histamines I've been taking...

My joints feel like Barbie's would feel after a girl twists them 360 degrees. I read yesterday antihistamines can cause myalgia and arthralgia..now I know why my sockets and thumbs ache...

Enjoy the rest of your day off...


02-03-2009, 05:12 PM
Awww head hugs my little tatterslug. Hope you are feeling perkier soon.

I still have my splitting head ache, the tylenol aint touching it....feels like a tight band around my head, my jaws ache and there's a damn spike being driven down the left front of my head....sigh.

02-06-2009, 08:57 PM
Tatterslug...roaring over here, SITC. I do look like the avatar. Tuckered out in a mound.

Three days later, how is the headache. Did you lose it? I think I found it.

Today hasn't been a good day for me. Too much awful that to type it would cause more finger joint pain. I became Sybil's twin. I look ugly and my words have been too.

I say I don't know what is happening to me, but I do, it is IT...

Have a wonderful Saturday...I too will. Try.


02-06-2009, 10:45 PM
Awe SITC. You should try some peppermint oil/pure grain alcohol rub. Works wonders on those bands. Is it gone yet?

Hey there Oh. Your spirit will lift again, don't lose hope. You will always be beautiful, especially when you smile. I do not need to see your face to know that. It shows in your words, even now. Hang in there, I see your light. Its not far away, tatterslug :lol: . That's cute!

02-07-2009, 01:56 AM
Awww Oluwa, sorry it has you by the spuds.

Hope you are feeling better today.

The headache is finally gone, it stayed with me for 3 days which is usual for that type of headache...yuck.

Hugs to ya cheryl_v, how are you doing?

02-07-2009, 07:03 AM
OK I guess. Kids screaming and running around. Yeah saturdays :roll: . My lil miss has taken to screaming and crying over every little thing all day! Makes me want to pull my hair out and cry. She's been like this for 2 weeks sraight, got to love those terrible 2's.

Glad your headaches gone SITC. Sounded like a migraine, they normally last 3 days regaurdless what you take or do.

How are you Oh? Shining that flash light for you. See, told you there was a light at the end of the tunnel :lol: .

Angel Oliver
02-07-2009, 11:31 AM

Just popped in to say hi and sending you all a gentle hug.


P.s.....and i was hungry and smelt pies or cakes...thought the nice smells of food was coming from here lol. Have you hidden it from me? :)

02-07-2009, 12:22 PM
Oh...the terrible 2s. I babysit my little God Daughter who has also decided to scream and cry over every little thing. When she is not screaming and crying, she is picking up and throwing; or getting into and messing; or climbing on and kicking.......How I cherish nap time! :lol:

Sending hugs of love to everyone

02-07-2009, 08:42 PM
That so sounds like lil miss. Only thing is I have hyper kids, naps gone by 2nd birthday. Oh well, makes an easy bed time. I just step over her when she's thrashing in the floor. Turn the radio when she screams to loud. She does give up and go play for a while since there's no attention gained from it.

Treated ourselves to Cici's today. Only around $25 for 3 adult meals and 1 kids meal and sodas (lil miss was free since under 3). Not bad, and no dinner cooking or mess for me to deal with. Lil miss had her floppy jean hat and pink purse, also carrying her stuff kitty. She was smiling and waving and blowing kisses. She was acting as she was a star. Couldn't believe she was the same girl throwing those fits all week. Got home, back to the same :? . Oh well.

I make goodies all the time Angel, maybe my baking you smell :lol: .

Angel Oliver
02-08-2009, 07:06 AM
Mmmmm i knew it :)

02-08-2009, 06:36 PM
Making fresh brownies tomorrow. I'll turn the fan towards the computer :lol: .

02-09-2009, 01:16 AM
im new just catching up on what everyone is talking about Oluwa you write so beautiful i am from sc beaufort have you ever been there I really relate to how you feel it was like reading my journal hope allyou guys are feeling good today

Angel Oliver
02-09-2009, 06:32 AM
OMG.......i smell em........where are they......mmmmmmm...(Angel begins to lick the computer) lol :)


02-09-2009, 08:27 AM
I havent visited this post for quite some time. Just wanted to pop in an say Hi.

And while Im here think Ill have some of the baked goods you have there cheryl. They smell perfectly delectable. Is that even a smell? Delectable?

Good day ya'll


02-09-2009, 08:43 AM

Headaches, children screaming, cookies and pies, rashes, hugs, brownies...what a bunch we are. Days filled with wonderful things and some not so swell. Is that what they call a 'chocolate mess'?

There you are, Saysusie...hugs. And how have you've been? I posted a blurb here a blip there asking...Will we be seeing any of those DC snaps?

SITC...Head hugs...My headache finally dissipated into thin air. It was in my head running about...up and til I went to sleep last night. This morning, gone. My eye sockets get it bad...toss in a bit of SS and my vision is like looking through wax paper.

Gosh, if I don't get off this couch, lounging moping about my potato eyes, roots are going to take hold...

Did that 4 day weekend come and go or still on the wish list?

CV...Oh, brownies...with waaaaalnuts? Drooling...I could dive into a plate full. With the glistening shining top that cracks and creates crevices where you see the rich chewy goodness inside. Who cares about gluten, where's the milky to wash them down with.

Maybe you should start screaming, to be funny when Lil Miss does..maybe it'll be a distraction her or the Naughty Chair...

Angel Oliver...Hey....hugging you back..squeeze. How was you weekend? Snow melted yet. We live in the southern US and I think our snap of freezing nights has past. I hope so, I don't think my gardens can take much more...otherwise I will have to start from scratch this Spring...

Thank you for your compliment...times words just flow and as of lately they have been getting stuck. My creative side is lock up, lock out because of IT...medicine, pain, menopause. My brain literally inside feels numb..like it has been injected with Novocaine. Dead to the touch, but yet it stills feels...

And how are you...?

I've been through Beaufort...but never stopped.

Me...I feel like my first post. Stumbling out of a mental rough patch. Sometimes, me with a disease I get into a vicious circle of pain, blues, then it drags all of me in, my mental clairty, my marriage, mourning me, fighting the changes....all aspects of me, into this tornado. Round and round...I am trying to break the cycle.

It is like finding the end of a knotted ball of string that my cat batted around. I found the frayed end now I am trying straighten me out...

It's all good....a work in progress, always in motion...

Happy Monday everyone...it is going to be a great week I keep reminding, telling myself. It is going to be, it is going to be...Yah!

Enjoy this day...keep well.

02-09-2009, 08:46 AM
Hi you Kasey....

Pop in often...and how are you? I think I left a message to you somewhere about the forum recently. I am drawing a blank as to where..hummm.

Be well...hugs..
Happy Day.

02-09-2009, 10:18 AM
Nausea is prevalent. Toilets are for butts and not my face.

Stress just smothers any thought. Extreme stress in the home. The load is too heavy for one, let alone the one with Lupus. My husband is always in the sky, city to city, or in a taxi, building to building.

I finally sat and read your very popular post and can identify with the above--thanks for sharing your thoughtful post. Oh, how I can relate!

02-09-2009, 10:19 AM
Well it's Monday, so far ... I got up at 4:30 am...just woke up :shock:

Did the launder, got the groceries, made some lunch and now I'm goofing around ont he computer :twisted:

Angel Oliver
02-09-2009, 10:44 AM
I am not going to hijack your board and moan moan moan.....but the snow has melted and i just watched the news who say more is on the way....boots are nearly on the step now lol :) Hope you had a good weekend and have'nt eaten all the cooked stuff that i can smell lol :) Im going over to the cookie jar to check cause i need chocolate noooooooooooooooow lol :)

Love Angel.xxx

02-09-2009, 11:30 AM
Angel, your too funny :lol: . I kicked the fan up on high for you :D .

Hi Oh, I'll turn the fan for the brownies your way too. No nuts, just pure chocolate with peanut butter drizzle. Treating myself for the stress and aggrivation thats been going on lately. If I wrote about it, I will fill the whole page. So instead I bake and clean to releave stress. At least the house looks nice and tummy's happy. I'll settle for what I can these days :D .

Angel Oliver
02-09-2009, 11:33 AM
Its working i swear its working....mmmmmmmmmmmmm :)

02-09-2009, 11:38 AM
Good!! :lol:

P.S. Also making my 10hr spegetti sauce, from scratch (nuts I know). Cooking is such a stress reliever for me. Everyone in the house kind of likes the outcome from my stress. Their just afraid to mention it :lol: .

02-09-2009, 11:58 AM
BonusMom Yep, the stomach problems can consume your whole thoughts and body...and stress. I really don't know what came first, stress, stomach problems but the both aggravate one another....


I don't feel like anyone hijacks it. It is just a place I started, a place to always find me..it is the only thread I have marked with an email reminder..and a place to chime in about anything to anyone whose chatting it up here...

Like a bunch of girlfriends visiting one another....

Say it isn't so..more snow. We don't have any I am tired of winter. Brown and browns. My Camellias are blooming but I yearn for more colors, greens grass....

SITC..enjoy, play, but make sure you keep a reserve for tomorrow to enjoy and not recup...

CV...Head hugs. I am an emotional eater too but you wanna talk about it after the brownies? PM?


02-09-2009, 05:05 PM
:shock: Ok Oh, but it will be long. Might be morning though, hubby brought a guest for dinner. Who happens to be staying the night too. I'll try for tonight though, no lil miss to enterupt.
You can pm me as well if need be before I pm. Thanks :D .

Angel Oliver
02-10-2009, 05:24 AM
Mmmmm spagetti. I have to say.....i love all food :)

and Oluwa thanks :)

02-10-2009, 05:31 AM
Head hugs Oluwa


How's the new diet treating you? Are you feeling lots of improvements?

Angel Oliver
02-10-2009, 05:32 AM
SITC....i do like that microwave lol :)

02-10-2009, 07:33 AM
Love the microwave smiley too SITC. How's it going for you lately?

Hi Oh, how is the new diet? Any easier yet? Still adjusting? Rash easing? Just wondering how you are doing and adjusting.

I love food too Angel. Making it, and definetly eating it :D .

02-10-2009, 07:55 PM
Hey SITC...did you frolic in your day off...movies, Uncle. How was the day? Woohoo short work week...

Diet...I am dreaming of your brownies and spaghetti, CV. Roasted garlic and buttered bread?

Funny..when I quit smoking, I noticed everyone who smoked. At the curb, in their car, walking on the street...in front of a building..smoke rings everywhere.

Now that I've stop all gluten... during a movie I see what is on the dinner plate during a scene. My eyes follow each actors bite...I stare at my husband's buttered bread and watch it go from table to his mouth. I feel up the bread in the grocer...crazy.

The rash..found a new home. Hives...only making guest appearances. Dosing with the Doxepin at night after all. I fought taking it, but caved in like a souffle. Contains the itch. My skin looks like a flour dusted loaf of bread.

My pain..does it ever leave? I am in a perpetual nagging flare..seems to be growing with each day. My joints feel like twisted legs on a whole chicken. The palms of my hands and the soles of my feet feel like someone pounded horseshoes on them. Ache all around the edge..weird, eh?

I lost my marbles last Friday..but I am gathering them back up. Does anyone else get so overwhelmed with physical symptoms you popped mentally? It seems to be an annual thing with me...same time as last year. Snap... pop like your microwave picture, SITC..imploded.

Sweet Dreams...see you in the next light...
Love, hugs and all that good stuff.

02-10-2009, 09:27 PM
Hi Oh.
I get so over whelmed with the physical pain too, and it effects me mentally. Brings me down, making me snap like a twig. Trying not to snap, its hard.

With the dinner I had corssants coated with garlic butter, then broiled. With hubby and 2 boys, we have bread with every dinner to help get them full. I'm not much on bread, but pasta is my weakness.

I also noticed those things when I quit smoking too. Being allergic to citrus fruit was a hard thing to get used to as well. After I found out and had to omit, I seen it everywhere. People drinking tall, cool glasses of orange juice. Kids snacking on tangerines. Fresh lemon or lime in every glass of tea and so many eating pink greatfruits for breakfast. It was maddening at first. A few times I caved in and snuck a little. My body quickly reminded me it was not worth it. So don't be hard on yourself if you do cave in. Its a learning curve.

Hey SITC, how was your day off? Wish I was you, I'm jealous :lol: .

02-11-2009, 07:13 AM
hi guys, i though I would join in on this "forbiddin foods" thread.

When diagnosed with interstitial cystitis, I had two options. I could participate in terribly painful treatment procedures, or I could adjust my diet. When the dr. said the treatment often sends patients into flares, the choice became obvious. I have cut out all spices, onions, acidic foods. etc. I have not had a taste of tomatoes in 10 years, and I still miss it. I would love to plow into a huge bowl of spaghetti, but I know the outcome. I miss orange juice - can only have baby pear juice. so many things that I would love to eat again....

unfortunately cigaretts do not cause me pain, so I have not successfully overcome this hurtful habit. My hat is off to all of you that have accomplished this.

share a smile today,

02-11-2009, 01:05 PM

To overcome the craving, the longing for something once enjoyed is showing a lot of love for ourselves or scared straight restraint, eh? 10 years of good loving...

Me? A dabble of both. I am so scared of those sores, the insanity, the change in personality from the intense itch and burn.

When I had a few sores pop up after unknowingly ingested gluten...it confirmed within me..it is in fact the culprit.

To quit smoking took many attempts...I went cold turkey..the withdrawals, the constant nagging to myself to break the habit, the mourning of losing my friend the stick and thinking a cigarette was so part of me, gone, was enough to keep me from lighting another. I didn't want to go through that nagging again...


02-11-2009, 03:04 PM
such a good point, Oluwa,

You are right, I have gone through each of those naggings, etc. so many times. I can't believe that I will have to do again, but I must and maybe this time with success,

Yes, I guess 10 years of good loving did help me get past the cravings. HeHeHeHeHeHe

share a smile today,

sick n tired
02-11-2009, 08:44 PM
Hey Oluwa,

I was wondering how you are doing? It has been so long since I have even had the strength to talk on here...



02-12-2009, 09:24 AM
And how you, Karen today? Your grandbaby? More additions to the family tree? How is Nadia?

Me, in and out of the forum too. I've taken a backseat in the forum lately. Read, post a little....hide a little. Nap a lot...extreme fatigue lately...

Dealing with the normal symptoms and arm wrestling the ones that are muscling their way up in the front seat with me.

This recent bout of rashes and hives tore me up for about 5 plus months. I am winning, he is in the back seat now I wrestling with shoulder, hip, feet and finger joints pain. Always one symptom that blares...over flows like a pot of coffee while the others percolate on the back burner.

Nothing new, nothing exciting...getting impatient for spring..summer to arrive. Flowers blooming, trees budding..grass turning green are always a pick me up for me....

As a whole I am doing okay. I hope you are too...and that you get stronger everyday...


sick n tired
02-12-2009, 10:25 AM
Sorry to hear about all your flares...does it feel like life is one big flare up? Sometimes it does to me...I am trying to get better after a nasty bout with pneumonia and pericarditis...the pneumonia is all but gone, but the peri is being more stubborn. Doc just went up on the prednisone...ugh...
That used to give me so much energy, but now I am washed out and dizzy long after taking it. I was losing weight, too, but not now with the pred.

After the cat scan I was dx'd with anneurysm in the artery to the spleen or Splenic something or other...

I agree...spring flowers, grass, new leaves and blue sky with clouds...I really live for that time of year. I just can't put it as poetic as you. Have you thought of righting a book of observations?
We had a tornado a few streets over 2 nights ago...that is not the springish weather I like, but a good thunderstorm and I am curled up in bed with a good book...sigh...that is what was great when I was younger.

My grandbaby is almost 11 months old. I haven't been able to keep her for the last few months because I have been so ill. The picture that I have as my avatar is Lexie at Halloween.

Nadia is doing great...she still has some residual pain in her chest, but not anything like last year...she is working toward becoming a nurse...something that last year we weren't sure she would make it to this year, much less be able to dream and make that dream a reality. I am sooooo thankful she is doing well. The heart stuff that I am experiencing is more the way it should be...

The only additions to the family this year will be in the form of Son-in-laws..Lexie's mom already married the dad, but now she wants some kind of formal ceremony and I am trying to work to help her...that "wedding" is in April, and our oldest daughter became engaged Christmas day and her wedding is in August...the other day Nadia told me that she and Vhee are talking about marriage and might want to be wed next year...phew...I am getting tired just thinking about it.

Does your hubby still have to travel? I hate it when Tony travels. He was out of town this last weekend...the rheumy was having kittens when he found out I was the only adult in the house. he wanted me to come to the hospital right then....but I lived..

Well I guess I should leave you alone, now after writing an epistle :)

Have a better day than yesterday,

02-12-2009, 02:35 PM
Karen...Eleven months...already? Boy, time does fly when one is or isn't having fun, eh?

My flare peaked, not it is just humming like a bee, ready to sting I suspect.

I use to have energy too while on Prednisone..now I get a jolt for the first two days. Afterwards I peter out...and more fatigue sets in. Then when I stop dosing I hurt more than when I dropped the first pill...ugh.

Aneurysm..do they just wait and see what happens. Sounds very serious, isn't it. Can they remove the enlarged and weakened section of the artery or repair it or remove the spleen? I wish you well.

My husband hasn't left the ground in a few months...travel should begin by this month's end if the project is ready for creation. He is a computer architect. Some projects can be built from the home office and many others, his clients want him on site. This next project is half and half...

Just depends on how tight the money is for the company he is creating a program for...the economy... is fortunately good, not affecting his field, IT...yet? Though there had been some layoff of subcontractors this week he said today...

Well wishes for your health and family...hugs
Enjoy the night..

sick n tired
02-12-2009, 04:59 PM
Hey Oluwa,

Yes...time did fly..I think sometimes the time flying is just being busy.

If your flare peaked...are you still in it? In pain?

My husband is doing IT...he also does computer forensics. Good that you have had a hubby for a while.

I got the aneurysm word last week and since then the doc has been trying to get my pulminary and cardiac stuff controlled and perhaps in remission..( I can dream) So I haven't been to a ? not sure what kind of Dr treats that. Arteriologist? Is there such a person? Anyway, I heard that they try to just get the aneurysm and leave the spleen intact, but if not enough blood is going to the spleen then they have to take it. This is just what I heard...as well as other docs do a wait and see. The mortality is really high if one of those pops...so..

This time of year is the pits...it is hard not to be down...I hope and pray that you are not in the dark pit, but out in the fresh air and seeing light.


Angel Oliver
02-12-2009, 06:19 PM
Hi everyone. I hope you are feeling a little better today. Please know when i pop in and dont write intelligent stuff....i am always thinking of everyone.Sometimes im just about to write something and its just bla bla bla and nothing that makes sense. I do care about you all. Oh and especially when you are cooking those nice mouth watering dishes lol :)


02-16-2009, 10:57 AM
http://www.freesmileys.org/smileys/smiley-sleep027.gif (http://www.freesmileys.org)

02-16-2009, 12:22 PM
Are ya resting up today...Oluwa?

Hope your weekend was good to you. :)

Lori :)

02-16-2009, 02:05 PM
Hi all, glad to see sights back up. Different and trying to get used to it. Is everyone well? Good? I hope so.

Hi Oh. Tried to reply to your pm, but it wouldn't let me. Said your space was full. I'll try again later.

02-16-2009, 02:39 PM
CV...I tried to send you a test PM and it said yours was stuffed too....


02-16-2009, 06:22 PM
Hi Lori...

Yep, a kind of a lounging about day...my usual....yawn. And your's?

Found the site was up, so I've been running about with mouse and keyboard...

Happy Presidents' Day.


02-16-2009, 07:10 PM
Happy Prez's Day back at ya....

My day has been relaxing as well....the 3 day weekend snuck up on me. I didn't realize the kids were gonna have an extra day off. That means one more day to sleep in for me. :)

It was the perfect day to roam around the new site and 'play'.

Good to hear from ya.....

Lori :)

02-16-2009, 08:07 PM

Trying to keep my face..spirit in the sunlight and breeze...

Having a disease, we are always a work in progress. Tweaking to feel whole...

Gosh, do you think if you wait for it to rupture you will begin to bleed internally. I think you would see an Internist. To me, it sounds serious...I wouldn't wait and see. Ask for a referral.

Hope your weekend was enjoyed by you...

Keep well..hugs,

02-16-2009, 10:20 PM

Your stuff is intelligent....you're enjoying your dreams about now. Happy to know you finally fell asleep. Chat up in the next light...

Keep well..hugs.

02-17-2009, 07:25 AM
morning all, how's everyones day?

love your smiley Oh, that's exactly what happened to me last night (lol). I woke and went to bed, been a long time since I dozed that easily. I have no idea how long I sat there, been so exhausted lately. Curious if yearly blood work will show anything.

02-23-2009, 01:08 AM
dear oluwa i am sorry to hear how bad things are i am sorry i have not talked to you lately but i am here now if you need to talk please try to feel better i know how you feel i have been feeling a little depressed lately this disease can be very cruel but you have helped me get through some bad times let me be there for you i only wish i could be there to give you a hug.you are in my prays many hugs kim l from australia

Angel Oliver
02-23-2009, 06:47 AM
Hi Oluwa and everyone.

Sending you all hugs and hope today you all feel a touch better than yesterday. I did think i smelt cookies.....lol.....:)


02-23-2009, 11:48 PM
Hi you, Kim...thank you for thinking of me...

You've been having a rough time of it. Head hugs. Falling down, oh, no! How are you fairing today. On the mend? Bruises healing?

Lupus and depression, feeling sad and whining seems to go hand in hand. I dislike falling in the stupid hole. I am just monotone right now..not up nor down. Floating about.

Feels like Lupus, toys with us, eh? Times I get consumed by sad thoughts too. Times I feel like I am just a head toting this body around and my spirit doesn't know if it wants to go for the ride anymore. So, I am numb in thoughts.

This past Friday was the first time I had been out of the house in almost 4 weeks. The movies..Taken and hand dipped ice cream afterwards...

The rash has healed..the joints throb and still bouts of hives. Trying to build up enough courage, enough faith and trust to go to the doctors. I haven't been to my Rheumba since November. I canceled my January appointment. My dermatologist not only scarred my skin, but my mind too. Left me feeling worn out with doctors...but I know I have to.

Have you asked your doctors maybe trying a different anti-depressant than Zoloft. There are more new ones out there..and may not give you the tremors. Have you spoke to your doctor about your side effects?

Isn't it summer there down under now? I am anxiously waiting for spring. Still many nights of freezing temperatures in the south of the USA. Unusual to have so many but my daffodils still broke out of the dirt last week. Spring is one its way..then summer..oolala so, I can swim again...

Swimming is so wonderful...do you swim?

Hope the day, Lupus will be good to you...thinking of you, Kim.

Be well...hugs.

02-23-2009, 11:51 PM
Thank you Angel..back at you....hugs..How goes life across the pond?

Cookies...I dream of them lately, along with a garlic, olive oil, spinach pizza. Doing the gluten free so my hankering is loud. Feed me...


02-24-2009, 12:38 AM
Spring is on its way....crocuses and daffodil by me.

02-24-2009, 07:08 AM
Hi Oh. I see you like spinach pizza too. My youngest son and I are the only ones in my house that like it. My hubby and other 2 kids think we are nuts. You are doing good on the gluten-free diet. I know its hard readjusting, I have food allergies myself. It gets easier in time, the urges and yernings do die down after awhile. Hang in there.

Did it feel good to get out? Waiting for spring myself here. I do love cool/cold weather, but miss my plants. Also don't care for the pain the cold brings, each year the pain is more and worse.

How's the mood today?

How is everyone else today? Here I'm blah, so tired and weak feeling. My eyes hurt today, ache and pressure. Just one of those crappy days.

02-24-2009, 08:18 AM
Oh Oluwa, I love the flower photos! We're still in a bit of snow....no flowers here! I'm so ready for spring....

Gentle hugs to all. Been too crazy at work, too exhausted when home to be online. Now a few days off, may hope to catch up a bit?

Spent time with my mother yesterday, will again this a.m. - - - bittersweet. Sometimes she recognizes me. Right before she starts telling me what to do - - "get that silverware out and on the table, people need to start eating all those sandwiches." O...K... best to go along with her, though there's no silverware, no sandwiches, and the nursing home takes care of the meals. She's in a safe place, and in her own world now. I guess on a good note, she often tells others that I've been visiting, even when haven't! (So I'm not too terrible a daughter!)

Ah well, life, as we all know it is full of twists, turns, and surprises.

02-24-2009, 10:45 AM
Just wanted to say Hi to you, Hatlady....I missed your presence around here. Was getting a little worried...Glad to see you were able to pop in for a bit. Hope you enjoy those few days off. :)

Oluwa...Been thinking about you...hoping you've been able to get some relief from this mess of a disease. Sending some hugs of comfort your way...gentle ones in case it hurts right now...and a few extra for your spirit. You are in my thoughts and prayers. :)

Cheryl....Sorry for your difficult days...weak and tired is so frustrating. Hope you find today is a bit better for you. I'll send some hugs of comfort your way too...and prayers for some extra energy to keep up with your family. I love the pics of your kids you shared. They're great looking kids...such solemn, beautiful eyes. You should be very proud of all the hard work you put in to raising your children. It is a huge feat to accomplish being a mom and having Lupus. You deserve a pat on the back. How about one for each kiddo. :)

Take care....

Lori :)

02-24-2009, 10:56 AM
Thanks Lori, I do love my little brat crew. Thanks for the prayers and hugs, I take help in any way. I have fibro, don't think lupus, but hard either way. Both are hard on bodies, much less throw in everyday life. Any suggesrions on eye pain and pressure relief, without closing eyes and resting. That I can not due with kids around. Took motrin, but no relief. Eyes burned and stung last night, then woke to eye pain and pressure in both eyes. It never ends, does it. Oh well, life. One day at a time. Hope your days going well.

sick n tired
02-24-2009, 12:57 PM
hey Oluwa,

In answer about the splenic aneurysm...I haven't even being thinking about it. I have friends who keep reminding me to have it checked, but I am having so much trouble upstairs I just can't do it. Right now the cardiologist has to release me to be able to even have some biopsies...not sure he will right now be cause my blood pressure is going up with the prednisone, but the pericardial effusion is still there...

How was your day...I hope it was relaxing and you can find one good thing that happened today....

02-24-2009, 05:12 PM
You sound as if your having quite a time lately sick n tired. Sorry its been so bad for you. I hope relief of some kind is around the corner for you. Prayers and hugs being sent your way.

sick n tired
02-24-2009, 06:37 PM
I'm having a hard time, Cheryl...I just read your on your sis...I am thankful that she is doing so much better. Did they find out what caused the seizure coma? or all those seizures...(not sure if she actually went in a coma)
How is the tiny one? I hope she is just growing right along.

02-24-2009, 07:29 PM
Hey, sorry again for how hard you've had it. Praying for a silver lining for you.

Sis is back to normal. Her bp was really high for someone her size, 5'6" and at the time 112lbs at 7mths pregnant. They said her body was stressed and heart working to hard. They are not sure if she went into a mild coma or body worn out and to physically exhausted to be woken up. They said they may never truely know, blood work didn't show anything. The baby is a healthy little piggy and doing good.

02-25-2009, 12:43 PM
Hi you, Hatlady....a big head hug. I can only imagine how hard it must be with your Mom...already missing her...hugs.

Still up to your lobes in gators..vacation on the schedule?

Near you...my brother lives in the UP, said they just got dumped on. Here in Charleston...cold, gray. So unusual for this area. May get a few days of freezing but not for weeks like it has been.

Plants that were suppose to be evergreen are on their last twig, branch...

Lori...Back at ya..hugs. Thank you for asking, for caring. And how goes life for you? Loved your Jamacia snaps. Thank you for sharing. I am..used to be a beach girl too..

Karen. Have you been in for your tests yet? I, were are concerned about you. Maybe you need your steroids adjusted or perhaps an immune suppressant drug. MTX...CellCept, Imuran. I wish you wellness, soon...

And CV..Hey..Yep, I still love a spinach pizza. I have been finding new gluten free products online...may sample a few. I feel so deprived...

Mood...monotone...steady, balanced..sane.

Hugs all around...squueeeze.
Lots of Love,

02-25-2009, 03:41 PM
Cheryl's sister: "5'6" and at the time 112lbs at 7mths pregnant." Holey crap, Cheryl! That's about 15 pounds lighter than me, and people tell me I'm thin! But to be that light an pregnant....Oh my, I'd be worried too. She remains in my thoughts and prayers...

Yes, Oluwa, work remains gators and messes...I check my e-mail every couple days when I'm home...and sigh. Mom's in a good place now, I miss being able to talk with her and share with her, but at least the world she's living in seems a happy one. Last year she knew she was slipping into Alzheimers - and mis-remembered things irritated her. Now she just keeps going with whatever thread... and seems happy. You have to laugh sometimes, or it would be too teribly sad.

CV and Oluwa - MMMM! Spinach Pizza! Haven't had a good one in YEARS....we had a place in town that made a wonderful spinach pizza. They closed and there's never been another that does it as well.

I found some old photos when I was cleaning up some things this week. Me, 1991, at the first home we owned. Planting hostas. Wearing shorts, a t-shirt and flip=flops. No hat. I've forgotten what the sun and breeze feels like on my skin - - but it looked like a pleasant day...

02-25-2009, 08:14 PM
Hi Hatlady. She is now 98lbs. Se was down to 92 after the birth. She's gaining a little each week. The pegnancy made her sick all the time, never could keep a thing down. She is a picky eater too, so it causes gaining issues. I'm good at making her eat, so they call when she gets stubborn. I just sit and make her, or else she gets hand fed. That usually works. Her appetite has been improving, so hope it helps her gain some weight soon.

Around here we have a restaurant called "Cici's", they serve a good spinach pizza. If its not on the bar (all you can eat pizza place), just ask and they'll make whatever you want.

Hey Oh. Let me know how those samples go. I hope it turns out good.

Mood here: stressed, crazy, tense, over whelmed, nutral and just blah with a little since of humor to keep things on the level somewhat. What a combo, lol.

03-18-2009, 05:14 PM
I go something like this...

Life went on without me this past fall and winter as I struggled through my rash and flare. Since 2009 started I only left the yard three times. I canceled my doctor appointments that was scheduled in advance from the previous year.

One of the outings was going to get groceries, the second to a movie which my body didn't enjoy or my eyes, but the vat of corn and ice cream was, (but not for my Lupus) and the third was last week when I could no longer deal with the havoc one of my diseases, Lupus or Fibro was causing...

I don't know what is bringing about my relief...finding clarity in how I deal with my pain in turn alleviates the stress, knowing help was on its way....or perhaps it just ran it's course and the wrath of IT was finally petering out after IT's six month storm...

I am never prepared, always without my umbrella...

It is amazing to look back and see the emotional pain I was going through and to see that girl and to know it was me who went through it. It doesn't seem real because on more than one occasion I said out loud and too myself I simply can't do this for another 40 years. This can't be my life. And here today my head is clear...it is going to be okay...

I even said that to my doctor last week..I can't live this life. I won't live it. How much pain do I have to choke down..this can't, this just can't be my norm.. I rimmed over with tears...got choked up, left with such disbelief in his care he provided. Disappointed.

Delpin? How is that going to help? Fibro? Savella at March's end? I questioned his instruction, his conclusions...

After evaluating my appointment, days later..it isn't his instructions that are off, it is his uncaring mannerism and personality that leaves me to lack trust in his care. Maybe I am being too generous with my understanding today...chuckle..

I wondered...am I really doing all I can for my body. And the answer is no. Though I felt I was, no preservatives, no processed foods...ah, I was slightly fooling myself. I know I should not be eating white sugar, a no no for SLE...but I've had one too many shares of Hershey's Bars and Kisses. I have fobbed my medicines when I've gone into denial about having a disease. I don't exercise everyday or weekly. I cancel many doctor appointments...oh there is so much more I could be doing.

So I am partial to blame for my flares...I wasn't doing all I could....prevention, prevention is a big part of managing Lupus. Prevent it, stop it, tame it before it gets to the pass and not wait to cut it off at the pass because there will be a showdown and usually I lose when I try the cut and care afterwards method..too late then.

I started to feel sad about what I missed, time I will never get back this past fall and winter...and instead took a turn in thought and started to think about what is ahead...Spring...Summer...

Evening beach walks...swimming...the smell of gardenias. Resuming my artsy stuff...photographs, making drapes...quilts, painting. A vacation...windows open....the sounds of lawns being mowed. Fresh fruits of summer. I need to create a routine...

I have such a wonderful feeling..instead of wondering how long it is going to last. I am just going to enjoy this day...and when I go to sleep each night I will hope, I will pray I have another tomorrow

Be well..keep well. I will too.
Much love,

Angel Oliver
03-18-2009, 05:31 PM
Oh Oluwa,

I understand some of what you have been through. I myself have been housebound for so long now, me who was so active, now so unwell and constantly being given so many hurdles to jump. I really like the fact YOU are now taking control over the illness and WILL have such fun times ahead.Oh what id do for a walk along the beach.Its such a positive post you have written and so pleased you have and you will start to live again. I want updates on when and where you go. Its so nice to read the positivity. I do realize you will have sick days still, but enjoy what you can.Yes, ok the chocolate....maybe change the brand, theres ways round everything. It may not taste as nice....but you can get a chocolate fix without certain ingredients in....mmm my mouths watering now.
I too wake up every morning and the dread hits me. Only cause i know, another day to convince people im not lazy and am sick. Another day where i struggle to even get out of bed. But one day Oluwa, i too will write a positive piece on here. I will no longer stay in afraid of the anxiety, the pain.I too will say....today I take control back. It made me feel nice reading your post. Oh those summer days....outside...a slow walk or a sit in a cafe. You enjoy it all, slowly.


Angel Oliver
03-18-2009, 05:36 PM
Ah lovely flowers.xxx

03-18-2009, 06:37 PM
dear oluwa,

what a beautiful vision of walks on the beach, gardenias, lawns being mowed, and open windows....yes that is spring in the south. you should probably add bbq grilling in the back yard to the list.

so sorry that you have had such a rough winter. i wish for you many good days of enjoying painting, quilting, and gardening.

since your dr. obviously did not help with this last flare, are you going to fire him and try another one? i hope you get good help and stay out of a flare for a long time.

03-18-2009, 07:31 PM
Ah, there's the real Oluwa. I new she'd come out soon. I knew IT would not be able to keep its hold on you. The real girl was locked up inside, waiting for her oppertunity to make a run for it. Good to hear the smile in your words. You mean alot to me and others, brings such joy to see you happy.

Question: what's with the no white sugar and lupus? Never heard of that before, just curious.

03-18-2009, 08:32 PM
Hi CV..Is is great when we feel great. I think it all started when I dyed my hair and painted my toe nails. I was looking at my chipped up polish, mumbling my feet use to be so pretty..ready to fall into a pity party...use to, use to...

I went for it, remember? I pushed through the Barbie Doll arm sockets..360 degree turn pain and dyed my hair and painted my toenails pink...I've been up, up and away every since...

Seeing my pink little digits makes me smile...a small bit of what use to be.

Sugar....from my understanding refine sugar produces an inflammatory response in the body by increasing your insulin levels..sending the immune system on alert....

I was also instructed to avoid artificial sweeteners, Splenda was safe... for the same reason, but I have read there is no validity that the artificial sweetners cause inflammation, cause or aggravate Lupus. I still avoid them...

That is why I say Hershey's Chocolate is my downfall, my piece of heaven, my sedation, my joy, my comfort....as if it was a sin to enjoy. Hard to give up....

I try..not my best though to follow an anti-inflammatory diet. I could always tweak it...

Thank you for the lovely comment....hugs...

Much love,

03-19-2009, 05:40 AM
Your welcome Oh. Nothing pleases a person more than nowing that their friend is ok and doing great.

Maybe I'll try the polish and hair dye. Scalps healed again, dummy me dyed it with the seborria last time. So results were not the best, patches near the roots. A big no-no, still can't believe I did it. I have another bottle of dye under the bathroom sink. Maybe give it a whirl this weekend. I also have chili-pepper red nail polish, that has matching lipstick. Haven't worn either in so long, maybe its time for that too. When did we just stop and let the pain decide our every move? It seems to happen so easy.

I've had problems with my sugar being a bit high, 105-112. Didn't know it could cause inflammation problems. I may only have fibro, but I do have inflammatory issues. I'll keep more of a check on it. I cut back, don't use it much. So must be in prepared drinks and food. I'll look at the labels. I want to keep my levels below 100. Although the hershey bar will be hard. I have 1 every saturday as a treat. I keep sweets down all week to have it. No other brand can quite compare to my hershey plain. It'll be hard, but I'll see about finding a less sugary sweet.

Wishing everyone well.

Hows the pain level Angel? Was thinking of you and wondering how you are.

Angel Oliver
03-19-2009, 07:04 AM
Hi Cheryl,

Oh i am ok thanks.You just take care of you and i hope you have a lovely day.

love n gentle hugs

03-19-2009, 07:34 AM
Just checking, daily battle of pain is hard on us all. I know how much you've been missing Daisy. Was wondering how you were doing with that. I'm doing a bit better. Working with my plants in the garden has been theraputic. Each day seems somewhat better.

03-19-2009, 09:26 AM
Hi A.O....

You know, my take on convincing people when I am dead tired, I am in pain is over. Sometimes I felt I needed to explain when really no one was asking for an explanation, especially being a woman I think we feel we need to explain...

Kind of like, oh, excuse my looks I just woke up, I was fatigued and exhausted when the doorbell rings at 3PM because..or we make sure we tell someone we gained weight before they say anything. Pardon my face it is the steroid bloat..or the zit just happened this morning, gross, eh...oh, in case you were wondering why I have a hat and jacket on in 80 degrees....

Two words just say..It's Lupus...or I've got Lupus, want some.. and leave it at that if they have the look of need to know...

Lupus..it's a need to know bases only..and that well basically only covers doctors.

I think once we stop stressing about what other people think, we may just get a decrease in the strength of our pain....

Walk the block for fresh air..it is small but a start to get you feeling better. Being a shut in feeds the depression and pain. Makes Lupus grow bigger and stronger. I know, been there...and I am sure I will find my way back. What is key is that we don't stay there too long otherwise it becomes our norm...

Hey it's Thursday..Happy Day...Angel..

Hugs..and love,

03-19-2009, 09:36 AM
Hey Phyllis...

We do BBQ's all year round...may just torque up the grill this weekend. We have charcoal and gas Weber. I love it. Bought it in the dead of winter, while in Ohio. Grilling in two feet of snow...

I always love charcoal over gas...so we replaced the original Weber which took a beating when from when we shipped our household goods.

And the propane lighting is handy....

My Rheumba...he is flawed, I did try to seek out another Rheumba who tried to undiagnose me, after 3 years of being. She said I was sleep deprived and wanted to conduct a sleep study at the MUSC here. Laughing and crying out loud I left...

I find all doctors are flawed, uninformed and overscheduled here..from head to toe..dentist to GYN.

Enjoy the day, I think rain is on its way tonight for our areas...


sick n tired
03-19-2009, 04:23 PM
I personally think that the doctors are all in competition, here...maybe where you are, too, Oluwa...it seems if you tell them something you have been dx'd with they have to say something else...and in my area..I am sent to all these other docs and ologists..and they don't even play nice in the doctor sandbox.. everyone wants to be in charge so they won't even listen to each other...too much ego.

Angel Oliver
03-19-2009, 05:05 PM
Yes i understand. But they say i do not have Lupus i have M.E this month anyway . Can you imagine....M.E they definitely think is all in the head. Or so some Doctors truly believe.

I have to say i lied to someone i had'nt seen for a while the other day. See it can work both ways.They said to me ''oh my you have lost so much weight'' i said yes i know and i told em i was in a low size clothing too. :) I felt so good and they believed me. Have i heck....ive been eating so much chocolate ive gained weight.....2 tins of chocolate worth :) So funny.People see what they want to see.....so i help them sometimes :yes:

03-19-2009, 05:17 PM
pardon my ignorance, but what is M.E? I'm sorry the doctors keep changing your diagnosis. I know from experience that it can be frustrating.

Angel Oliver
03-19-2009, 05:25 PM
Hey fab name cause im called Amanda too really .xxx I can never remember it or spell it...its on my blog but i'll give it a go. Myalgic Encelop bla bla i carnt spell it or its known as well as Chronic Fatigue Syndrome. The illness some doctors think and family think you are just lazy, not in pain or so exhausted you can not get out of bed....but lazy :) Like i have nothing better to do with my life, no more holidays or days out, or work or friends....:no:
Oh the fun!:no:

03-19-2009, 06:59 PM
hi Oluwa,

yes, the grill definitely comes out this weekend.

i guess i am very lucky. my pcp is very attentive and keeps a close watch on all of the ologists that i see, and checks meds for me, etc. I had a problem with her on the first visit, decided to try again, told her my concerns from first visit, and now we are great. i am thankful that she is my dr. I also get all referrals from her for dentist to gyn. ha ha ha love some of the visions i get while trying to communicate via cyberspace.

my rheumy has been working with me for about 10 years, and she knows me really well. therefore, i don't have to endure any attitude when i see her.

enjoy your bbq, i will send you a loopie smile while grilling some fish and veggies on saturday.

i know we can't wish away the crazy life with lupus, but i so wish that everyone could have a good dr. on their team.

03-19-2009, 07:12 PM
Hey fab name cause im called Amanda too really .xxx I can never remember it or spell it...its on my blog but i'll give it a go. Myalgic Encelop bla bla i carnt spell it or its known as well as Chronic Fatigue Syndrome. The illness some doctors think and family think you are just lazy, not in pain or so exhausted you can not get out of bed....but lazy :) Like i have nothing better to do with my life, no more holidays or days out, or work or friends....:no:
Oh the fun!:no:
Angel (or Amanda, whichever you prefer),

I'm really sorry to hear that. I have read some info about CFS (or ME) and it just seems like it's a cop-out diagnosis when dr's can't really figure out the true cause of your fatigue. I'm sorry you are dealing with that, I know that must be difficult. I hope they figure it all out soon, for sanity sake :) Keep hope and faith that it'll all work out, and always try to stay positive, thou we all know that is easier said than done!


Angel Oliver
03-20-2009, 05:21 AM

Thanks so much for your help and kind words.

Angel.xxxxx (Amanda:laugh:)

:hijacked: sorry Oluwa. I could just eat a bbq burger with onions and cheese mmmm.You have a great time.xxxxxx

03-20-2009, 06:50 AM
Oh Oluwa

I'm so happy for you. I remember when the plaquenil finally kicked in for me. It was subtle, I was putting in the garden and suddenly realized that I was able to actually step over things! Befor it kicked in I could barely lift my legs to go up the steps and there I was gardening.

I still have joint pain, but nothing like what I had been going through. If you find it makes you queezy or dizzy ask your doctor if you can take both of your daily pills together with a small tub of yogart right before bed.

Any of the side effects I had from the plaquenil disappeared when I followed my doctor's advice. It did make me dizy and naucious, but not any more.

Head hugs to ya, I'm so happy for you. It's probably a combination of your change in diet as well. That must help alot with your tummy upsets.

03-20-2009, 08:42 AM
Hi SITS...

Happy Spring...

Thank you for the love...I am happy I feel better too. I think I am going into a intermission...and not because of Plaquenil as I have been on Plaquenil for a few years, I think it has run it's course because I was flaming with rashes and my myalgia and joint pain was huge....and that is what is it suppose to control.. Wondering without it would it have been mammoth size?

It too worked wonders when I first started dosing....I remember just headaches and nausea for a week or soo at first....but these last 12 months I had been getting worse...then as of late sooooooooo much better.

When I went to my last appointment I wanted to see about other drugs, such as an immnosuppressant drugs...nope. Prescribed Deplin...but I started to feel a bit better before I got into my appointment, so it isn't the drug. This food drug takes about 2 weeks to kick in and it is used for depression..I guess. I was told it was to help with the fatigue...

I never really eat processed foods. Just Hershey's..ice cream...and Movie Corn and that isn't a daily thing. Hersheys had been of late, because it made me feel good emotionally and without my usual bread fix since gluten free I upped the Hershey's dose..for about a month.

Otherwise prefabricated food, in a colorful wrapper...nope. No boxed food always been fresh except I eat canned Albacore and Salmon...frozen peas and spinach. That is the closest I get to processed unless they pull a fast one in a restaurant.

So that dose of sugar...gone as long as I can be strong and work out my emotions and stress before I need that pounder of Hersheys...

And I do like my babybacks...now and then...

I do need exercise, that is where I have been failing...it is so hard when in pain to push through. I use to do aerobics everyday..hike and bike weekends before Lupus took a strangle hold..now if I stretch it is an accomplishment. I am going to work on that...

Matter of fact I did a small, short core routine this morning. My creation of yoga and simple stretches...Flexibility, then build my muscles...

And how goes life with you...any prospects in the work force?

Snow retreating?


03-20-2009, 09:02 AM
No new prospects, I've applied for two jobs that do not close for submissions for another 2 to 3 weeks.

But I keep checking the job marts and I'm trying to be patient.

My brother, who has a house in Arizona has invited me down for a visit, but I had to turn it down. Too much stress on the finances and I have to be here to job hunt. Oh well. It was a lovely gesture on his part.

Hope you're have a great day, catch ya later.

03-21-2009, 12:57 PM
Sits, while Arizona is a nice place to visit....it is so dang SUNNY that it is a bit of a pain for sun-shunners like us.

Hope your job search takes a very quick positive turn - -would be a lovely way to start the spring!

I've been feeling well, a bit stressed as work is ... sigh ... work. It seems the faster you go the behinder you get. Ah well, I always say busy is better than bored...

Hugs to all -

03-21-2009, 06:00 PM
I have not seen this thread for quite sometime. Im so glad to hear about the possible remission. How wonderful. I think Im having a bit of a reprieve also.

Its so good to "see" and "talk" with you again here in the how I go thread.

Take care.

04-14-2009, 09:44 AM
I go something like this...

Life with Lupus..IT has been pretty good to me lately. I've been tolerating him for so long it is about time he reciprocated back, don't you think? Hopefully, it isn't a short temporary favor...

I've did more in the last month than I had in the last 7 months. I was literally becoming a shut in...thinking this is just Oluwa's routine..that is how it goes for me. I was beginning to accumulate dust on my shoulders. I was becoming a fixture on the bed, on the couch. Like pillows piled high on a bed for decor, really no other purpose...and put away when it is time to go to bed...

Just today I planted nine hostas, one fern, three gardenias, two Hibiscuses and a small shrub...gosh last fall it would have taken me a month to get them in ...today, in less than an hour...

My finger nails even have an edge to catch dirt under them....after clipping them to the quick for months so I wouldn't use them as a tool to carve up my layers of skin. I felt so unfeminine for so long...rashes, scabs, scars and skin like leather...no wonderful perfume layered on my skin...it would burn. Today I am spritzing with Escape and Be Delicious...I shower in warm to hot water....while I was battling the rash it was cool to cold..how cruel...

While you're in a SOS flare it is hard to be grateful...today I am so grateful...for the life that is in me and around me.

I had such a great Easter morning...The breeze blew so soft, like a whisper against my skin..raising the light down blonde hairs on my face. It was a great day to be alive. I felt a refreshing of my spirit as I pinched and pruned the little branch sprigs from my trees. Admiring how things have grown since last week. Everything, flowers, shrubs look so small and puny from afar, but close up..life is blooming. I tried to depict in my snaps...some of those flowers are only the circumference of an eraser tip. The veins that feed life into the leaves…the stamen, pollen to create more life…so amazing.

Thought of Easter, what it means...what a day a glorious day to be resurrected and I felt all living things in my space, in my yard. The wind rustling the leaves about… birds chatting it up with another. Children going around and around on their skateboards…the wheel rotating in the pavement…

The more I stay in the positive, the more I move…each day I feel better sharing my life with Lupus, Fibromyalgia, Gerdie and their friends too. Falling in the stupid hole is now like tripping over uneven ground. I get up, shake the dirt off my hands and knees…rub the wounded elbows and off I go.

Each day I am learning what Lupus expects of me. I don’t think IT really wants to be in my life. IT is just letting me know what I need to do to keep him from taking over my life. And it is all the things, that every book, every web site says about Lupus…how to manage it. It is better to find ways to prevent the symptoms from taking over than finding ways to cope with the symptoms when they are out of control…in an SOS flare.

I've always said..my life is like a kaleidoscope, with each turn my beliefs, my thoughts change. I always hope with each day, each turn I get better than before...in spirit, in friendship with myself, with life, with family and friends, with my diseases. I am always a work in progress.

I can't imagine a life, my life that went unevaluated and tweaked...always honing and tuning.

I feel a wave of creativity returning...woohooo...

Be well, keep well.
Hugs filled with love,

04-14-2009, 09:58 AM
So glad to see you posting on this thread again. You sound good, and I'm happy for you. Plant and grow. With yourself, as well as your yard. Enjoy every day. Keep brushing that dirt off, nothing but a stumble. Easy to handle.

Hugs, smiling knowing that you are in good spirits.

04-14-2009, 02:05 PM
Love your avatar Cheryl..reminds of the roads we'd cross while hiking in the Cascades in the Seattle area. The greens are so sharp and vivid...lemons and limes. Ferns big as a round dinner table...neon yellow green moss growing on the trees...I just love that area...

When I look back on my posts from day one I can see how my words flow or didn't with my flares.

It is so amazing...it feel like that last flare was so long ago. It is so easy to forget the ugly...the ugly memories of rashes, cries and severe pain replaced with new happy ones of today....clear skin, moderate pain....no stupid holes...

It feels like I am like an old tubed TV...turning a knob to fine tune. I am fine tuning, learning from each flare, things I must do. Things I can do without a doctor to keep the flares less frequent and less fierce. And not fight the changes I must make, but except them without kicking and screaming...

Something so simple...I would stammer in my mind when I had to switch to a sponge on a handle to do my dishes instead of a cloth...my hands give me so much grief. But hey, if they don't get cleaned this round, after using them again maybe they will the second time or the third...

So much we have to adapt to...instead of feeling like I surrendered myself to IT I am learning to live with it..from holding my toothbrush to layering 6 pillows across the top of my side of the bed so I don't have to twist and pull on my arm sockets....

Sometimes I wonder how much the southern weather, the winters affect my flares. Seems I am always the sickest in the winter...or perhaps the summer make me feel the best...hummm....

My husband and I were chatting up the other night while he was in the hotel. I was describing my chest and back pain. I said I think it maybe pain in my esophagus. He gasped and said, "How in the hello does anyone feel their esophagus, I don't..." I wouldn't either if I didn't have Gerdie...but having diseases makes us so aware of our bodies. I too would not like to feel my hand resting on my leg...but I do. Times I outline the hand in my mind by feeling the pain..weirdo...I know. I listen to it pulsate with pain...weirdo...I know.

It has been a great 6 plus weeks..I'm savoring and favoring all good things so it lingers and lasts and lasts. I can tolerate this, if this is my norm...

Love ya,

04-14-2009, 02:22 PM
I loved reading your posts and can't tell you how happy I am to hear that you are happy and enjoying life again! I am glad that the last flare seems like it was so long ago. I hope that it becomes a very distant memory that finally fades into a small tug on your mind.."When was that?"
Also, I am hoping and praying that you never, ever go back to that place again; that you continue to relish in the warm breeze on your face, that you continue to savor and favor all of the good things in your life..for there are many good things in your life!


04-14-2009, 02:59 PM

thanks so much for sharing this very vivid picture of you feeling so good that you can feel the gentle breeze on your skin. We so often get bogged down on what is hurting, troubling, devastating each other, and your post was a nice break.

enjoy your life, and we will try to build a wall that won't let lupus back in.

04-14-2009, 04:22 PM
Thanks Oh. Decided I wanted something with color. Reminds me of some of the woods around when I was a child. Loved running down the dirt roads that were made from the traveling trucks.

Love hearing that joy in your voice. I sure hope its contagious, lol.

We do seem to be so intuned with our bodies, more than others who have no illnesses. Experiences teach us so much. Best to at least learn from it, than to ignore.

May your days keep getting better.

05-09-2009, 08:27 PM
Now how did I miss these last few post...I am like a month behind..egads.

You guys are so kind, so sweet...thank you for the nice words.

I wanted to say...

I went swimming today...Hooray! I go something like this..I feel wonderful....summer is here. Many more days or wrinkly water logged skin....fingers that look like a shrivel pruned and hair turning blonde three inches up the ends...woohooo..I waited 7 months....I hope those north do not have too much of a long wait for summer warm days and cool evening breezes...

Summer..makes me feel so alive...everything is renewed. Lime green shiney leaves after the Spring's flowering, dark blades of grass after each mow, new bikes pedaling by..spring dresses in color of Crayola crayon box of 8..and the summer Ice Cream truck playing songs for the young ones as it passes by...My spirit is renewed...I may just run and get me some ice cream on a stick....

A great summer it is going to be... me and my fins...

Happy Day.
Happy Mother's Day.
Today I wanted for nothing...


05-09-2009, 08:49 PM
Now how did I miss these last few post...I am like a month behind..egads.

You guys are so kind, so sweet...thank you for the nice words.

I wanted to say...

I went swimming today...Hooray! I go something like this..I feel wonderful....summer is here. Many more days or wrinkly water logged skin....fingers that look like a shrivel pruned and hair turning blonde three inches up the ends...woohooo..I waited 7 months....I hope those north do not have too much of a long wait for summer warm days and cool evening breezes...

Summer..makes me feel so alive...everything is renewed. Lime green shiney leaves after the Spring's flowering, dark blades of grass after each mow, new bikes pedaling by..spring dresses in color of Crayola crayon box of 8..and the summer Ice Cream truck playing songs for the young ones as it passes by...My spirit is renewed...I may just run and get me some ice cream on a stick....

A great summer it is going to be... me and my fins...

Happy Day.
Happy Mother's Day.
Today I wanted for nothing...


I love the summer because I can swim to. I about the only exercise I can do.
But haven't got to start this year yet but will soon. I am wrinkled all summer too !!!


05-12-2009, 02:28 PM

You're just north of me, so warmth should be on its way. Today was icky...supposed to be all week...sigh.

Swimming I love because it just envelopes and holds my joints...I float about looking at the tree tops and the blue sky...Birds float effortlessly by...and I can play catch with my Riley and I don't have to bend over to pick up the ball...she loves to swim too...

And Pookie gets propped up on the chaise with her fur coat baking in the warm sun....no sunscreen required.

Enjoy the night...hugs.

05-12-2009, 04:31 PM
Oh Oluwa...I'd love to see a pic of Riley swimming and Pookie basking in the sunshine.

Perhaps there'll be another photo op for the both of them this summer. :veryhappy:


Lori :grin69:

05-12-2009, 07:15 PM
I would love to see a pic of them too. I can almost see it now. I love animals, but cats are my favs. I enjoy the pics of Pookie a lot, Riley too.

Hot and miserable in FL, wish I had your temp right now. Wish I had a pool too. My lil miss figured how to bring a chair over and try to get in the above ground we had last october. We took it down right away, going to have to wait awhile before putting it back up again. Oh well, better safe than sorry.

How do you feel this evening? Hope your day went well.

sick n tired
05-12-2009, 11:01 PM
Hey Oluwa,

Are you getting all this rain in North Carolina? In Texas we are getting water logged, almost like an invisible bucket is being dumped everytime it rains...real gully washers this year...it is hard to be able to swim because one moment it is clear and looking like it is going to be summer, and the next it is cloudy and raining...or worse we have a tornado problem...

I just got back from Virginia...I go to pick my son up and it is a road trip...It rained most of the way up and back...

All this said...I want to "go something like this" with you, but swimming is out for now... :(

05-13-2009, 05:28 AM

I sent you a pm, but wanted to post here too. Want to make sure you get my message (lol). Hope you have a joyous and relaxing day. Hope the ginger plant you want is in today. Best of luck and wishes to you. Thinking of you on your special day.

05-13-2009, 10:27 AM
hugggg..... xx

07-21-2009, 07:07 AM
I go something like this...

I woke up, I still feel a bit trashed from Saturday...and not from ounces and ounces of Red Eye beers.

Funny, edging the lawn and a swim can tear us down. I've done it before without such defeat. Time to evolve with my Lupus again. Change...adapt. Even smaller my world gets. I wonder how small can it get. No trips to the market? No swims? No gardening? That is really all I have left.

I feel so weird in the head...when I lay down and start REM sleep and wake after 10 minutes of snoozing. I call that quaking sleep...On the surface sleep, but rumbling underneath anything can awaken me.

When I open my eyes I feel, scared, nauseated, hopeless inside...like as though something terrible has happened in my life. Like the feeling I had when I felt I was closer to dirt than living a bit over two years ago when I found my way here.

It is during the time not fully awake only and once I sit up and move about it dissipates. Leaving the residues of a sick feeling inside me though. Wondering what the hells is dat...not a good feeling, not even a bad feeling ...but a terrible feeling

I've noticed this happening before this recent flair without a Louis Vuitton belt. Even on my 'norm' days...

I don't like it...trying to keep my mind busy, but when I feel like Barbie doll joints, twisted 360 it is hard for me to keep my mind occupied-o with activity without inciting more pain.

Books and TV, sedating..leads me back to that quaking sleep...humm. I feel I am stuck for the moment. Fear to nap and I don't want to do any activity... avoiding a prolong flair without my Calvin Klein jeans.

Wondering if it is the flare or maybe the Lortab I now take daily and nightly...

I am susceptible to the change in mental behaviors side effects of these drugs....

Hummm...I wonder as my mind wanders. My mind goes left..my body goes right. Don't know.

Deep breaths....making another attempt to take on the day.

Trying to keep well and be well.

sick n tired
07-21-2009, 07:44 AM
Oh Oluwa, <<<<<squeeze>>>>><<<<<Gentle hugs>>>>:hug:

I am so sorry you are going through this...I hate when that happens with the sleep and "quaking" as you put it...
Maybe it is a side affect of Lortab.

I am very suseptable to the mental side affects of Lortab...sometimes it feels like I am going crazy:wacko:...So I am here to tell you you are not going mental...I try to keep telling myself "and this too shall pass"...Perhaps some soothing music might help and be of a calming affect...I find that I practically live online when I am ill and it helps take my mind of things.

I am praying for relief and a calming soothing sleep for you...

10,000 Blessings,


07-21-2009, 07:57 AM
Try and see if you can change your med when you go to the docs, to see if that's it. One step at a time. If its it, maybe you'll feel better when its changed. If its not, see what the next step can be. We are all here for you, the best that we can. You have helped me from my hole so many times, here to help you too my friend.

I have flash light and shovel in tow, it helps me thru. I keep spares, so catch.........................did you get it? Here if you need me, many many hugs.

Hugs and lots of love...............................CV

Angel Oliver
07-21-2009, 09:50 AM
Im so sorry to read you have the same feelings ive been having lately.I too say speak to the doc and see if you can change the meds if possible.If not.....ive already got that shovel n flashlight.....so i'll start digging n make us a little cave and i;ll bring night time picnic goodies like chocolate n chocolate n ch,well you know.Hope tonight is the night that sleep kicks in again as well.
Thinking of ya turdi
love n hugs

07-21-2009, 01:06 PM
Karen...where did you come from? It has been a spell...how goes it? I've been taking Lortab for...humm over a year, it is just I have been increasing the dose the last month or so because Lupus has been kicking me in the joints, wrestling with and pinning me to the ground. So, I was too thinking it was the culprit...

Thank you for the prayers and blessings....

Hows the new pad? Family, grandchildren...and etc.

Hi ya CV....I have an appointment with my new RheumBA on the 3rd. Maybe my whole medicine tote can be tweak.

I haven't toppled in the stupid hole yet...I am balancing on the curl of the surf wave....wheeee.

If I keep focusing on the cause, probable cause, Lupus..medicine and not life itself I should be able to maintain my balance...

Like Karen said, this too shall pass...but man what is pulling it.. a turtle?

Amanda.. If I go into the cave I may not wanna come out with all that chocolate. Gosh, maybe it is chocolate withdrawals. You think. It has been a spell since I peeled back the brown wrapper of a Hershey's Plain Bar. Maybe my husband will bring home Sees candy if he makes a stop in North Carolina...oolala....

I sleep at night, it is the naps that make me feel weird and when I wake up...

Home from the countryside, yet?

My second attempt at my day..putzing about. Washed my table linen, ironed it...freshening it up for when my family arrives next month. Stripped the guest beds. Sat on the porch swing and rocked and rocked. Sorted through my snaps, seeing what ones to print and frame...brushed the animals coats....and here now it is 4pm.

Boy do I know how to drain a clock, eh...slacker.

Oh and NO naps...

Hope everyone had a bit of love, a bit of smiles, a bit of hugs in their day today. Me, I hugged and love my animals...and that made me smile...

What's for dinner?

aka Turdie.

Angel Oliver
07-21-2009, 02:34 PM
Yes im back now.Oh that rocking chair....i must buy one,put a quilt on it,climb on n rock myself to sleep maybe...sounds fab.
Ah ...mine is both naps n waking up first thing.It isnt usually there for so long though....usually passed by now...must like me so its hitch a ride in me lol. I try to shake but its claws are hanging on lol...but im keeping on keepin on!
Wow, you did keep busy today.Oh how nice,bet cha carnt wait for your family to arrive...company,talks,maybe go out for lunch sometimes,swim,eat chocolate? Yes maybe eat 1 bar of chocolate as you swim,so it'll come off in the water...sounds like a fab idea. Sending you gentle hugs n lts of love

P.s Karen...hello n we missed you.Hope life is treating you good n you feel ok.xxxxxxxx

07-21-2009, 05:11 PM
A.O. Ugh....well, we have tomorrow, maybe things will change up for us. But isn't it an awful feeling to choke down. My stomach gets nervous thinking about if I wake up in the night....maybe I should take a Xanax too...

See you tomorrow, Turdette.

07-22-2009, 09:50 AM
Hello my dear friend...

I think i have pretty much spoken to you all day, and you are only @ noon lol now you would be swimming in that lush pool of yours,

You are having a better day today right? i mean all the excitement got far to on top of you :)

peace out my dear


07-22-2009, 10:10 AM

Ah, the swimming was great. Cut short by rain. Here a few sprinkles could turn into a thunderstorm quickly....so I fled after 20 minutes.

Pookie was so cute, being an indoor cat she never experienced rain. When it started to sprinkle...she kept turning her head, past her rolly fat looking up at the sky, what the..what is that....who is throwing water on me and scurried into the sun porch. I roared has her butt waddled faster and faster...

I wonder if my butt look like Pookie when I came in from the rain too...

I enjoy our lovely morning together...I should go check on the cabbage...

I do feel a better today. I know for all of us with Lupus or any other disease it is hard to choke down...times I skip along, knowing I have Lupus, like knowing I have a foot, an ear..it is there and times it seems so real, unreal.. Reality has been settling in.

Times I toy with the idea..maybe I don't have it...then the other day I took snaps of my face. Reality...

Being well soon, my norm..love,
Me - Oluwa

07-22-2009, 10:31 AM
Thats the days you dont need reminding of the illness...its everywhere you turn, i dont look at "those pics" on my profile because its scares me and then.....thetears start, i dont need reminding that im trying to live with an incurrable illness all the time...and when you put it like that my heart suddenly skips a valid beat i was trying to keep for a scary moment in my life...ah well i guess its just that way.

Thats why i enjoy all the good days i have...like today just chilling in a feild with a mate talking about stuff...plowing fields, those are the good times i remember and can look back on (shame its not a real feild) but it can be in my world!

Lots of love

07-22-2009, 11:04 AM

I was taking snaps of my sore...my face for my new Rheumba. Geez, when I put on makeup I guess I see it in inche sections..and in a full mirror I am all dolled up..plaster on to cover it...otherwise I don't look in the mirror, not even when I brush my teeth or my hair for the day since I am in the house all day...

I avoid eye contact with myself...(oh, that sounds so sad, eh?)

Then the snap...wow...I look like a boozer...or Rudolph's sister...Santa's kin...

I would love to pick weeds and pumpkins in real time with you and get goosed too...but we can imagine and it too seems real...our friends. We create an imagine of who they are, how they laugh, how they are sitting, what their kitchen looks like when they pop a 'toast' in their toasters........we imagine in our heads. I see a lovely you in my imagination....

Love and hugs.
Mrs. O

07-22-2009, 02:53 PM
hehe Mrs O.....the toaster is nearly as big as my kitchen seriously i have the smallest kitchen on this earth, i really dont know what they were thinking when they made my house, i have this little window in my bedroom that is the size of a cat flap like way up high...i dont half giggle when i ask norma to shut it....she has to jump...happy times bird!

I try to avoid eye contact with myself too at my house i have 2 mirrors one in my bathroom that is the shape of an orange and one long one in my bedroom (it was my nans) and the only reason i have it cause its got a butterfly on it and ive had it since she died, if i brush my hair or do anything infront of the mirror its with my glasses off......woohooo we are blind that way! so i cant see any sort of blemishes on my face, although when i see folk they say WTF has happened to your face....GREAT start to my day!

So there we have it,


Angel Oliver
07-22-2009, 03:02 PM
:) Jane thats so awful if they say that...you should make up a good story....a bear was in the garden..you fought....yeh yeh make it a BIG story...news of the world picks up on it..you get rich...we laugh at them :)

Oluwa i so hope you begin to look in the mirrors more often and begin to heal.Im hoping this next new rhumba dumba is the answer for you,to help n make you be able to do more.No backflips..but more..live n not just exist.New meds new answers new help hey? Yes i'll keep sending good vibes out for this new doc!
You are such a lovely friend....you support so many here...make me hungry allot :) cause of nice foods you cook....we all love you ...so sending you gentle hugs my friend.

Amanda,Jess,Oliver n soosie.xxxx

07-22-2009, 03:08 PM
here here i second that too :yes:


Angel Oliver
07-22-2009, 03:11 PM
Jane.....we going with the story? I'll say i saw the bear? :) Think money?

07-22-2009, 03:14 PM
It was a really big bear....i guess ppl would understand mmm if you told them?

It was nothing to do with lupus.......What is that anyway?....made up word im sure it has summin to do with a wolf......lupus does not exsist you see, no autoimmune does cause its all in YOUR head....

Im going back to the bear story.....££ here we come


Angel Oliver
07-22-2009, 03:19 PM
DOH.....Jane no ...it was the wolf....sorry i wasnt thinking,fog n all that.The wolf was in your garden...you were taking the bins out....it grabbed you...i ran n called the papers :) Then.....you get the money AND the lupus story out there?xxxxxxxx :)

07-22-2009, 03:24 PM
Ahh see i was getting a bit confused there...bears obv look like wolves right?

Erm yeah and it rubbed my face with its paws with left a odd looking imprint on my face....that turns purple when im ill....(remind me how we are gonna make our millions again?) :)

how are we gonna get onto the point where the wolf came from?

lol happy times Amanda


Angel Oliver
07-22-2009, 03:26 PM
Oluwa came to visit us.Un beknown to her,when she was packing the phone rang......wolf jumped into the case.She came back...zipped it....got on the plane? Any good? :)

07-22-2009, 03:38 PM
So, I have the wolf?

07-22-2009, 03:39 PM
Next time they say that..ask them if they want to lick it, ISDM...

Angel Oliver
07-22-2009, 04:24 PM
Yes it jumped in your suitcase :)

07-22-2009, 04:27 PM
Is it alive or can I wear it as a coat?

Angel Oliver
07-22-2009, 04:32 PM
Its alive,so dont open the case :) I started this ...sorry was going bit mad. How you feeling now? Your mind n body easing?x

07-23-2009, 07:20 AM
why would you even want to wear it as a coat?

I cant stop smoking today i dont know whats up with me lol


07-23-2009, 07:33 AM
ISDM...could it be the steroids?

Fur coat...have the tail sweeping around my neck like a scarf...


07-23-2009, 07:36 AM
Amanda...Mad? Mad? If you are going mad, can I come with? Oh, I am already there... L., O.

07-23-2009, 07:39 AM
Yes it is ive just worked out im eating more and what is usually had after food?! yup!

im sure the tail would be dragging on the floor :)


07-23-2009, 07:53 AM

Things do get better, its sounds like today is one of those days for you. And you are entitled to it. Dont be down about it though, alot of the stuff you mentioned happens to me too, and Ive been going through it since i was 17. I know sometimes this disease can be so emotionally debilitating but we have to stay strong for ourselves and each other, especially on these days. And for the record I think that you are very creative. You dont even realize how natural it is for you, thats a god given gift..... and baby... that aint going nowhere!!! lol. Cheer up hon, things will get better. I promise.... Hugs!!!

Love Chriss

07-23-2009, 08:23 AM
Hi Chriss...

Isn't amazing in a not so good way..that first post was written over 2 years ago..and well, I haven't come a long way baby. For the most part I am still the same..even worse.

Thank you about the creativity compliment. I guess I don't realize it is still there because I don't feel it inside. I feel like a chalkboard that has been erased.

My thoughts and how to get out of the hole is better than 2 years ago. I've learn to change and adapt...times I struggle, can't believe the real. I fight and then it wins..I cave in and I..well, adapt.

Thank you for your kind words...today is better than yesterday, more better than the day before. Clearer head...the pain is returning my 'norm'....

Another day...and so far it is alright. I like it.

Keep well.

05-24-2014, 06:54 PM
Every once in while I come back to this thread that I began 7 years ago... It is like a history book of my life. Times it help me when I've been lonely after Bola died. Thinking about my life, afraid to forget, so I come back every once in to read what I shared, we all shared..the days in our life with our family.

Thank you for letting me share my pain, my love....and thank you for sharing yours with me. I wonder how all of you are doing who shared this thread with me..too many names to list but none ever forgotten. I hope you are all well in spirit and have found ways for your body to cope with this thing we call IT.

Head hugs with love...O.